Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and…
Social workers play key roles on interdisciplinary hospice teams and in hospitals on oncology or palliative care teams. Though palliative care settings include both home hospice and hospital-based consultation services, the different environments and…
BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people…
This article surveys worldwide medical, ethical, and legal trends and initiatives related to the concept of pain management as a human right. This concept recently gained momentum with the 2004 European Federation of International Association for the…
PURPOSE: Physicians sometimes selectively convey prognostic information to support patients' hopes. However, the relationship between prognostic disclosure and hope is not known. PATIENTS AND METHODS: We surveyed 194 parents of children with cancer…
PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United…
PURPOSE: To examine US and United Kingdom (UK) parents' approaches to care and treatment when standard therapy has failed and consider implications for clinical practice. METHODS: We conducted a prospective, ethnographic study of parents, patients,…
In the history of science, technical advances often precede periods of rapid accumulation of knowledge. Within the past three decades, discoveries that enabled the noninvasive measurement of the psychobiology of stress (in saliva) have added new…
ABSTRACT: BACKGROUND: Bone pain in malignancy can be challenging to treat. Bisphosphonates have been found to be useful in adults with bone pain, but there are no reports of their use in children for this indication. In pediatric palliative medicine…
BACKGROUND: Advances in biomedical science and technology have resulted in dramatic improvements in the healthcare of pediatric chronic conditions. With enhanced survival, health-related quality of life (HRQOL) issues have become more salient. The…
ABSTRACT: BACKGROUND: Hospital deaths following several hospital admissions or long hospital stays may be indicative of a low quality of dying. Although place of death has been extensively investigated at population level, hospital use in the last…
BACKGROUND: Providing ongoing family centred support is an integral part of childhood cancer care. For families living in regional and remote areas, opportunities to receive specialist support are limited by the availability of health care…
BACKGROUND: There are few cost-minimisation studies in telemedicine. We have compared the actual costs of providing a telepaediatric service to the potential costs if patients had travelled to see the specialist in person. METHODS: In November 2000,…
BACKGROUND: Progressive encephalopathy (PE) in children is a heterogeneous group of diseases mainly composed of metabolic diseases, but it consists also of neurodegenerative disorders where neither metabolic nor other causes are found. We wanted to…
OBJECTIVES: This paper offers an overview of the findings of research into the experience of having cancer in adolescence and young adulthood, the aims of which were to understand how age and life stage affect the illness experience and impact upon…
OBJECTIVES: The purpose of this study was to identify the factors that predict good adherence to health regimens by adolescents with diabetes (insulin-dependent diabetes mellitus). METHODS: Altogether, 300 individuals aged 13-17 years were randomly…
As health researchers we need to investigate a wide range of topics to enhance our understanding of the many issues that affect health and well-being in today's society. Much of the health research undertaken today involves face-to-face encounters…
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused…
Cancer is the second leading cause of death in the United States, with most of these deaths taking place in the hospital setting. Discussions on end-of-life care and on cardiopulmonary resuscitation in particular are an important component in the…
This article describes the use and effectiveness of adjuvant propofol for pain control for pediatric oncology patients at the end of life. All patients experienced severe pain and agitation, not well controlled by continuous infusion opioids and…
OBJECTIVE: To obtain feedback from families of children receiving palliative and supportive care about their care needs in hospital and in community settings. DESIGN: A two-phase combined quantitative and qualitative study. SETTING: Western…
BACKGROUND: There is only limited knowledge about the emotional impact that performing euthanasia has on primary care physicians (PCPs) in the Netherlands., OBJECTIVE: To obtain more insight into the emotional impact on PCPs of performing euthanasia…
BACKGROUND: Respiratory depression is the most feared opioid-related side-effect yet research on the topic is sparse. We evaluated changes in respiratory parameters during parenteral opioid titration for cancer pain to determine if opioid titration…
It has been identified that there is a need for increased palliative care research within the paediatric setting. The assessment of parental views is necessary for this population. However, the conduct of research and recruitment of participants is…
BACKGROUND: Empirical data on the changing epidemiology of congenital heart disease (CHD) are scant. We determined the prevalence, age distribution, and proportion of adults and children with severe and other forms of CHD in the general population…
BACKGROUND: Interactive voice response (IVR) systems that collect survey data using automated, push-button telephone responses may be useful to monitor patients' pain and function at home; however, its equivalency to other data collection methods has…
OBJECTIVE: Intra-articularly applied opioid agonists or antagonists modulate pain after knee surgery and in chronic arthritis. Therefore, the expression of beta-endorphin (END), Met-enkephalin (ENK), and mu and delta opioid receptors (ORs) within…
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…
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…
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…
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…
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…
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…
