Background Malignant pleural effusion (MPE) and ascites (MA) negatively impact quality of life of palliative patients. Treatment options are limited. This study's purpose is to examine the experience with indwelling tunneled catheters (ITCs) for…
Costello syndrome is a rare genetic condition caused by heterozygous alterations in HRAS and characterized by multi-system abnormalities. Individuals with Costello syndrome usually present with severe feeding difficulties in infancy, short stature,…
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
Purpose:To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved…
OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and…
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and…
Seizures are a frequent complication associated with several neurogenetic disorders. Antiepileptic medications remain the mainstay of treatment in these patients. We summarized the available data associated with various antiepileptic therapies used…
OBJECTIVE:: Current models of chronic pain recognize that psychosocial factors influence pain and the effects of pain on daily life. The role of such factors has been widely studied in English speaking individuals with chronic pain. It is possible…
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal…
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life,…
BACKGROUND: Pediatric palliative care (PPC) programs facilitate the provision of comprehensive care to seriously ill children. Over the past 10 years many such programs have been initiated by children’s hospitals, but little is known about their…
Background With the transition of care of cancer patients from the hospital to the home setting, parents are largely responsible for children's pain management. Children's cancer pain is undermanaged, yet, there is little empirical data on the…
OBJECTIVE: to investigate and analyze communication in palliative care contexts from the perspective of nurses, based on Humanistic Nursing Theory. METHOD: this is a field study with a qualitative approach, in which ten nurses working in the…
Pediatric epileptiform encephalopathies are a group of neurologically devastating disorders related to uncontrolled ictal and interictal epileptic activity, with a poor prognosis. Despite the number of pharmacological options for treatment of…
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have…
Abstract Background: The experiences of young people who have siblings with life-limiting illnesses are not well understood. Aim: The study proposed to identify the concerns of siblings of pediatric palliative care (PPC) patients. Design and…
This study identified and explored the informal social supports that bereaved parents found helpful following the death of their primary school-aged child. Ten participants were interviewed using a semistructured interview schedule. Data were…
Abstract Background: The medical literature encourages primary care pediatricians (PCPs) to play a role in the care of patients who are dying. Actual involvement has not been investigated. Objective: Our objective was to explore current involvement…
The stress and uncertainty surrounding pediatric cancer diagnosis and treatment can be experienced as traumatic by both patients and their parents (e.g., Landolt, Vollrath, Ribi, Gnehm, & Sennhauser, 2003). Although previous studies have demonstrated…
Abstract Objectives: In Germany since 2007 children with advanced life-limiting diseases are eligible for Pediatric Palliative Home Care (PPHC), which is provided by newly established specialized PPHC teams. The objective of this study was to…
Abstract Objectives: In Germany since 2007 patients with advanced life-limiting diseases are eligible for Specialized Outpatient Palliative Care (SOPC). To provide this service, SOPC teams have been established as a new facility in the health care…
Trisomy 13 and trisomy 18 (T13-18) are associated with high rates of perinatal death and with severe disability among survivors. Prenatal diagnosis (PND) may lead many women to terminate their pregnancy but some women choose to continue their…
Negative prognostic communication is often delayed in intensive care units, which limits time for families to prepare for end-of-life. This descriptive study, informed by ethnographic methods, was focused on exploring critical care physician…
BACKGROUND: Children's palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and…
CONTEXT: The progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available. OBJECTIVES: To systematically review the evidence for…
Specialist paediatric palliative care is a relatively new area of paediatrics, and the interface with other disciplines can occasionally pose challenges for referrers due to lack of information about the diverse services available. Although services…
CONTEXT: Previously reported studies of children with cancer mostly provide cross-sectional knowledge of the prevalence of symptoms but do not show when during the disease trajectory and after the end of successful treatment certain symptoms are most…
CONTEXT: Communication is widely acknowledged as a crucial component of high-quality pediatric medical care, which is provided in situations in which parents typically experience strong emotions. OBJECTIVES: To explore emotion using the Linguistic…
OBJECTIVE:: To describe parents' experience of organ donation decision making in the case of donation after circulatory determination of death. DESIGN:: Qualitative exploratory analysis. SETTING:: Participants were recruited from the ICU of a single…
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and…
BACKGROUND: Hip fractures constitute an economic burden on healthcare resources. Most persons with a hip fracture undergo surgery. As morbidity and mortality rates are high, perioperative care leaves room for improvement. Improvement can be achieved…
BACKGROUND:: Few studies have described the well siblings' experience of grief when a brother or sister is treated for cancer. Knowing how sibling grief is expressed will guide clinician and family efforts to provide appropriate support. OBJECTIVE::…
