Browse Items · Pediatric Palliative Care Library

What influences parents' decisions to limit or withdraw life support?

OBJECTIVE: Decisions to forgo life support from critically ill children are commonly faced by parents and physicians. Previous research regarding parents' perspectives on the decision-making process has been limited by retrospective methods and the…

Vulnerability and Agency across Treatment-Seeking Journeys for Acutely Ill Children: How Family Members Navigate Complex Healthcare Before, During and After Hospitalisation in A Rural Kenyan Setting

BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…

Videoconferencing to reduce stress among hospitalized children

OBJECTIVES: Family-Link is a videoconferencing program that allows hospitalized children and their parents to virtually visit family members and friends using laptops, webcams, and a secure Wi-Fi connection. We evaluated the association of…

Variations among Institutional Review Board reviews in a multisite health services research study

OBJECTIVE: To document the Institutional Review Board (IRB) review process and to explore the impact of different patient notification procedures. DATA SOURCES/STUDY SETTING: Review of IRB application and correspondence records prospectively…

Validation of the palliative performance scale in the acute tertiary care hospital setting

BACKGROUND: Physicians are often asked to prognosticate patient survival. However, prediction of survival is difficult, particularly with critically ill and dying patients within the hospitals. The Palliative Performance Scale (PPS) was designed to…

Use of a clinical pathway to improve the acute management of vaso-occlusive crisis pain in pediatric sickle cell disease

BACKGROUND: The most common, debilitating morbidity of sickle cell disease (SCD) is vaso-occlusive crisis (VOC) pain. Although guidelines exist for its management, they are generally not well-followed, and research in other pediatric diseases has…

Unlicensed and off label analgesic use in paediatric pain management

BACKGROUND: The management of pain in children has advanced enormously in recent years. Pharmacological treatment of pain is complicated however, by the widespread use of unlicensed and off label medicines in the paediatric population, leading to…

Tags: 2001, Analgesics/therapeutic use, Backlog, Child, Conroy S, Drug Approval, Drug Utilization, Great Britain, Hospitals, Humans, Journal Article, Paediatric Anaesthesia, Pain/drug Therapy, Peden V, Pediatric, Prospective Studies

Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed

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,…

Undernutrition at PICU Admission Is Predictor of 60-Day Mortality and PICU Length of Stay in Critically Ill Children

BACKGROUND: There are few studies that assess the role of different nutritional assessment variables at pediatric intensive care unit (PICU) admission in predicting clinical outcomes. OBJECTIVE: To identify nutritional variables in the first 4 days…

Uncertainty and Perinatal Post?Traumatic Stress Disorder in the Neonatal Intensive Care Unit

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post?traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of…

The sense of coherence in early pregnancy and crisis support and posttraumatic stress after pregnancy loss: a prospective study

A. Antonovsky (1987) defined the sense of coherence (SOC) as the ability to perceive a stressor as comprehensible, manageable, and meaningful. In this prospective study of pregnant women, the authors tested the relationships between the SOC in early…

The natural history of juvenile or subacute GM2 gangliosidosis: 21 new cases and literature review of 134 previously reported.

OBJECTIVE: Juvenile GM2 gangliosidosis is a group of inherited neurodegenerative diseases caused by deficiency of lysosomal beta-hexosaminidase resulting in GM2 ganglioside accumulation in brain. The purpose of this study was to delineate the natural…

The impact of a palliative medicine consultation service in medical oncology.

This prospective study of consecutive patients describes the palliative medicine consult service in a tertiary level cancer center and its impact on patient care. All inpatients/outpatients referred to the Palliative Medicine Program in a 4-month…

The effectiveness of a self-reporting bedside pain assessment tool for oncology inpatients

BACKGROUND: Pain is common during cancer treatment, and patient self-reporting of pain is an essential first step for ideal cancer pain management. However, many studies on cancer pain management report that, because pain may be underestimated, it is…

The development and evaluation of the pain indicator for communicatively impaired children (PICIC)

A previous study found that parents of communicatively impaired children with severe cognitive impairments identified six core cues as indicating definite or severe pain in their child (J. Pediatr. Psychol. 27 (2002) 209). The frequency of each cue…

Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and…

Talking with parents about end-of-life decisions for their children

BACKGROUND AND OBJECTIVE: Retrospective studies show that most parents prefer to share in decisions to forgo life-sustaining treatment (LST) from their children. We do not yet know how physicians and parents communicate about these decisions and to…

Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity

OBJECTIVE: Anxiety and depression may have a major impact on a person's ability to make decisions. Characterization of symptoms that reflect anxiety and depression in family members visiting intensive care patients should be of major relevance to the…

Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study

STUDY OBJECTIVES: More than two thirds of family members visiting intensive care unit (ICU) patients have symptoms of anxiety or depression during the first days of hospitalization. Identifying determinants of these symptoms would help caregivers…

Symptoms in children/young people with progressive malignant disease: United Kingdom Children's Cancer Study Group/Paediatric Oncology Nurses Forum survey.

AIM: The purpose of this study was to survey symptoms in children/young people with progressive cancer and identify which are the most important and which are the most difficult to treat effectively. PATIENTS AND METHODS: This was a questionnaire…

Switching from morphine to oral methadone in treating cancer pain: what is the equianalgesic dose ratio?

PURPOSE: To define the dose ratio between morphine and methadone in relation to the previous morphine dose and the number of days needed to achieve the same level of analgesia in a group of patients with advanced cancer with pain who switched from…

Switching from morphine to methadone to improve analgesia and tolerability in cancer patients: a prospective study

PURPOSE: To evaluate the clinical benefits of switching from morphine to oral methadone in patients who experience poor analgesia or adverse effects from morphine. PATIENTS AND METHODS: Fifty-two consecutive cancer patients receiving oral morphine…

State Variation in Posthospital Home Nursing for Commercially Insured Medically Complex Children

BACKGROUND AND OBJECTIVES: Home nursing is essential for children with medical complexity (CMC), but provision varies substantially across states. Our objectives were to quantify state-to-state variability in distribution of posthospitalization home…

Socioeconomic differences in childhood hospital inpatient service utilisation and costs: prospective cohort study

STUDY OBJECTIVE: To examine the association between socioeconomic position at the time of birth and the use and cost of hospital inpatient services during the first 10 years of life. DESIGN: Analysis of a database of linked birth registrations,…

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research…

Serious adverse events after measles-mumps-rubella vaccination during a fourteen-year prospective follow-up

BACKGROUND: Several disorders have been attributed to measles-mumps-rubella (MMR) vaccination during the past decade. The aim of this prospective follow-up study was to identify serious adverse events causally related to MMR vaccination. METHODS:…

Sense of coherence, life stress, and psychological distress: a prospective methodological inquiry

Antonovsky (1987) has proposed the Sense of Coherence (SOC) as a global perceptual predisposition in responding to life stress. Composed of comprehensibility, manageability, and meaningfulness, this construct has been associated with more adaptive…

Sedation for children with metachromatic leukodystrophy undergoing MRI

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…

Satisfaction with palliative care: what should we be aware of?

This review addresses some of the methodological, theoretical and technical issues related to using satisfaction as an outcome measure of the quality of palliative care. The components of palliative care are presented, and the different approaches…

Tags: 1998, Backlog, Fakhoury WK, Humans, International Journal Of Nursing Studies, Journal Article, Outcome Assessment (Health Care)/organization & administration, Palliative Care/psychology, Palliative Care/standards, Patient Satisfaction, Prospective Studies, Quality Of Health Care, Research Design, Retrospective Studies

Safety of polyethylene glycol 3350 for the treatment of chronic constipation in children

OBJECTIVES: To assess the clinical and biochemical safety profile of long-term polyethylene glycol 3350 (PEG) therapy in children with chronic constipation and to assess pediatric patient acceptance of PEG therapy. DESIGN: Prospective observational…

Safety and pharmacokinetics of medical cannabis preparation in a monocentric series of young patients with drug resistant epilepsy

OBJECTIVES: To evaluate safety and pharmacokinetic parameters (PK) of medical cannabis in add-on for children and young adults with drug-resistant epilepsy. DESIGN, SETTING: Ten patients (4 females, 6 males, age 2.5-23.2 years) were enrolled in a…

Safety and efficacy of rosuvastatin therapy for the prevention of hyperlipidemia in adult cardiac transplant recipients

BACKGROUND: Hyperlipidemia after orthotopic heart transplantation (OHT) is associated with immunosuppression. Many OHT patients have increased lipid levels above published guidelines despite treatment with high doses of statins. Treatment with…

Role of advance directives in palliative care units: a prospective study.

Advance directives (ADs) might be useful in achieving improved communication and satisfaction with decision making at the end-of-life. Our aims were to better characterise patients with advanced oncological disease who decided to complete ADs and to…

Risk of secondary bacterial infection in infants hospitalized with respiratory syncytial viral infection

Because infants hospitalized with respiratory syncytial virus (RSV) infection frequently receive antibiotics, our study was undertaken to determine what the actual risk of secondary bacterial infections in patients with RSV infection is and what…

Responsiveness of the motor function measure in neuromuscular diseases

OBJECTIVES: To study the responsiveness (sensitivity to change) of the Motor Function Measure (MFM) in detecting change in neuromuscular disease patients with the intent of using this measure in future clinical trials. DESIGN: Prospective cohort…

Relationships between symptom relief, quality of life, and satisfaction with hospice care

Hospices were founded to alleviate suffering at the end of life. Quality improvement in hospices should, therefore, target patients' subjective assessments of their care and its outcomes. However, little is known about the relationships among…

Relationship of illness severity and length of stay to functional outcomes in the pediatric intensive care unit: a multi-institutional study

OBJECTIVE: The purpose of this study was to establish relationships between illness severity, length of stay, and functional outcomes in the pediatric intensive care unit (PICU) by using multi-institutional data. We hypothesized that a positive…

Quantifying physical decline in juvenile neuronal ceroid lipofuscinosis (Batten disease)

OBJECTIVE: To use the Unified Batten Disease Rating Scale (UBDRS) to measure the rate of decline in physical and functional capability domains in patients with juvenile neuronal ceroid lipofuscinosis (JNCL) or Batten disease, a neurodegenerative…

Quality of life related to type 1 Gaucher disease: Spanish experience

The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a…

Tags: 2005, Backlog, Exercise, Gaucher Disease/pp [Physiopathology], Giraldo P, Giralt M, Humans, IM, Journal Article, Perez-Calvo JI, Prospective Studies, Quality Of Life, Quality of Life Research, Questionnaires, Rubio-Felix D, Solano V, Spain, Spanish Group on Gaucher disease

Browse Items (148 total)