Mucopolysaccharidosis IIIA (MPS IIIA) is a lysosomal storage disorder characterized by progressive mental deterioration and severe behavioral problems. We conducted an open-label, crossover study of the efficacy and safety of Risperidone on…
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…
BACKGROUND: Although pediatric hospice care is commonly accepted as a beneficial intervention, the incremental advantage over end-of-life care delivered without engaging hospice remains unknown. The primary objective of this study was to describe…
Compassion fatigue (CF) is recognizable. It erodes the professional's ability to function at an optimum level. Depression, caregiver stress, secondary trauma, and post traumatic stress syndrome (PTSD) are very much a part of the daily landscape for…
BACKGROUND: Children undergoing stem cell transplant (SCT) experience high levels of somatic distress and mood disturbance. This trial evaluated the efficacy of complementary therapies (massage, humor therapy, relaxation/imagery) for reducing…
Congenital muscular dystrophies are a group of rare neuromuscular disorders with a wide spectrum of clinical phenotypes. Recent advances in understanding the molecular pathogenesis of congenital muscular dystrophy have enabled better diagnosis.…
OBJECTIVES: To estimate the frequency of hastening death discussions, describe current parental endorsement of hastening death and intensive symptom management, and explore whether children's pain influences these views in a sample of parents whose…
Restructuring health care in Canada has emphasized the provision of ambulatory and home-based palliative care. Acquiring economic evidence is critical given this trend and its tremendous demands on family caregivers. The purposes of this study were:…
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.…
OBJECTIVES: This study aimed to learn about experiences of Mexican American and Chinese American families who require pediatric palliative care. This article describes parents' perceptions of information-sharing by health care providers during their…
Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older…
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: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…
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…
The objective of this study was to provide a preliminary description of trajectories of life-limiting conditions (LLCs) using qualitative experiential data. Semi-structured interviews were conducted with families of children with LLCs, selected to…
Neurodegeneration with brain iron accumulation encompasses a heterogeneous group of rare neurodegenerative disorders that are characterized by iron accumulation in the brain. Severe generalized dystonia is frequently a prominent symptom and can be…
BACKGROUND: Patients with metastatic non-small-cell lung cancer have a substantial symptom burden and may receive aggressive care at the end of life. We examined the effect of introducing palliative care early after diagnosis on patient-reported…
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…
This article discusses end-of-life issues in critically ill cancer patients. Since the majority of deaths will occur after limiting or withdrawing life support, focus should be given to ensuring that multidisciplinary family meetings are convened to…
PURPOSE OF REVIEW: To present an overview of the recent findings in pathophysiology and management of epileptic seizures in patients with brain tumors. RECENT FINDINGS: Low-grade gliomas are the most epileptogenic brain tumors. Regarding…
PURPOSE OF REVIEW: This review focuses on anticonvulsant treatments in patients with brain tumors and epilepsy, in consideration of the rapidly expanding spectrum of these agents. RECENT FINDINGS: Despite the fact that this clinical condition is…
Performance scales are used by clinicians to objectively represent a patient's level of function and have been shown to be important predictors of response to therapy and survival. Four different scales are commonly used in the palliative care…
OBJECTIVE: To explore factors that influence how informal caregivers manage medications as part of caring for hospice patients. METHODS: Semistructured, open-ended interviews were conducted with 23 informal caregivers and 22 hospice providers from 4…
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…
BACKGROUND: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process.…
CONTEXT: Palliative care programs have the opportunity to intercede and provide supportive care to parents whose families have been impacted by their children's illnesses. By understanding how families are impacted, programs can refine their service…
The objective of this paper is to evaluate the educational value of a documentary film about family caregiving for patients with brain tumors. The method used in this study is a pre-post survey among neurosurgeons, neuro-oncologist, and other…
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative…
We assessed the sampling performance of research on parental perspectives in pediatric palliative care and examined if and how gender imbalance was treated. We undertook a systematic review of parental perspectives research in pediatric palliative…
BACKGROUND: Poor muscular strength has been shown to be associated with increased morbidity and mortality in diverse samples of middle-aged and elderly people. However, the oldest old population (i.e., over 85 years) is underrepresented in such…
