Many children in the United States fail to reach their full health and developmental potential. Disparities in their health and well-being result from the complex interplay of multiple social and environmental determinants that are not adequately…
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents…
Photovoice is a participatory research methodology in which individuals photograph their everyday realities. The present study used photovoice to understand the impact of cancer on a sample of six young adult survivors of childhood cancer (YACS) and…
OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns'…
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…
Research has focused heavily on mother's experiences of children with life-threatening illnesses. In contrast, fathers' experiences, especially among minorities, are scarcely discussed. This study examined the experiences of 15 fathers as primary…
ABSTRACT: BACKGROUND: An aging population, rise in chronic illnesses, increase in life expectancy and shift towards care being provided at the community level are trends that are collectively creating an urgency to advance hospice palliative care…
Adolescents and young adults (AYAs) with cancer are a heterogeneous group. Nevertheless, there are sufficient unifying characteristics to form a distinct clinical entity. Management of this special group requires a broad-based interdisciplinary…
BACKGROUND: Chronic neuropathic pain affects 1%-2% of the adult population and is often refractory to standard pharmacologic treatment. Patients with chronic pain have reported using smoked cannabis to relieve pain, improve sleep and improve mood.…
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: We compared end-of-life care for patients with and without orders for "comfort measures only" (CMO) and evaluated whether standards for palliative medicine were met., DESIGN: We retrospectively reviewed the charts of 40 patients, 20 with…
OBJECTIVES: To explore the feasibility and validity of forced spirometry in patients with ataxia telangiectasia (A-T). STUDY DESIGN: Twenty-eight patients (aged 3.7-19.3 years) performed spirometry on 47 occasions. Parameters studied were technical…
OBJECTIVE: To clarify the process of end-of-life decision-making in culturally different neonatal intensive care units (NICUs). STUDY DESIGN: Review of medical files of newborns >22 weeks gestation who died in the delivery room (DR) or the NICU…
Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral…
[Purpose] This study aimed to examine problematic behaviors of mentally handicapped children receiving pediatric physical therapy, through applying the Japanese version of the Aberrant Behavior Checklist(ABC-J) to persons receiving pediatric physical…
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…
Patients with advanced cancer often experience multiple concurrent symptoms. To explore this symptom clustering and its associated parameters, we prospectively surveyed 427 consecutive patients on admission to the Palliative Care Unit. There were 222…
OBJECTIVE:: To report a case of postnatal, postoperative amiodarone-induced hypothyroidism in an infant with a congenital heart defect. DESIGN:: Case report and literature review. SETTING:: Pediatric intensive care unit at a freestanding tertiary…
This study examines the reliability and validity of internet research in bereavement. Recent literature demonstrates an increased interest in utilizing a more convenient, inexpensive, and rapid internet method to collect data and recruit bereaved…
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…
OBJECTIVE: While research has established that pediatric pain is undertreated, it is unclear who should have primary responsibility for its management. This study asks pediatricians who they believe should treat pain and how pain should be assessed…
While we do not yet know how Nature is nonlocal, interdisciplinary research in the areas of physics, biophysics and neuroscience going back over 4 decades, reveals that Nature is nonlocal. Nonlocality appears to have been observed between human…
Pilot studies for phase III trials - which are comparative randomized trials designed to provide preliminary evidence on the clinical efficacy of a drug or intervention - are routinely performed in many clinical areas. Also commonly know as…
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…
OBJECTIVE: To conduct a systematic review of published research on the pharmacologic treatment of pain after spinal cord injury (SCI). DATA SOURCES: MEDLINE, CINAHL, EMBASE, and PsycINFO databases were searched for articles published 1980 to June…
The objective of this study was to examine globus pallidus internus deep brain stimulation (GPi-DBS) outcomes in primary and secondary dystonia, derived from blinded ratings using two scales and two raters. Twenty-five patients with variable…
OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…
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,…
Background Recent discussions about health care reform have raised questions regarding the value of advance directives. Methods We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died…
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…
BACKGROUND: No study has so far addressed whether differences do exist in the management of cancer-related pain in patients admitted to oncology and non-oncology settings. PATIENTS AND METHODS: A multicentre cross-sectional study in 48 Italian…
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…
