Browse Items (148 total)

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with…

IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management,…

PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged

Spinal muscular atrophy (SMA) is a common neuromuscular disorder of childhood, associated with a high mortality rate during the first 2 years of life. Most practitioners expect patients with SMA to follow a progressive course with loss of muscle…

OBJECTIVE: To assess the perception of parents concerning the state of comfort maintained in their infants born with life-limiting conditions and treated by a standardized neonatal comfort care program. STUDY DESIGN: Participants were parents (n=35…

Background: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death…

OBJECTIVE: To determine bereaved parents' perceptions about participating in autopsy-related research and to elucidate their suggestions about how to improve the process. STUDY DESIGN: A prospective multicenter study was conducted to collect tumor…

A randomized, double-blind, prospective study was performed to determine the effects of perioperative administration of morphine or methadone on postoperative analgesic requirements and pain scores in 35 children aged 3 to 7 years undergoing major…

Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…

OBJECTIVES: We sought to characterize the nature and prevalence of medication order errors (MOEs) occurring at hospital admission for children with medical complexity (CMC), as well as identify the demographic and clinical risk factors for CMC…

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,…

OBJECTIVE: To examine whether typical pain behavior, as reported by caregivers, could be used prospectively to predict future pain behavior and to derive a subset of core items from the Non-Communicating Children's Pain Checklist. STUDY DESIGN:…

BACKGROUND: Advances in paediatric critical care have resulted in increased survival of critically ill patients, many of whom require long-term ventilation as a means of life support. AIM: To determine current trends in resource utilization, and…

The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care…

OBJECTIVE: To describe the attitudes and practice of clinicians in providing sedation and analgesia to dying patients as life-sustaining treatment is withdrawn. STUDY DESIGN: Prospective case series of 53 consecutive patients who died after the…

BACKGROUND: Neonatal death is often preceded by end-of-life medical decisions. This study aimed to determine whether the context of death - after a decision of withholding or withdrawing life-sustaining treatment (WWLST) or despite maximum care - was…

PURPOSE: To determine hormone concentrations (ACTH, cortisol, beta-endorphin) in children before and after surgery, to assess the correlation between any hormonal changes and to study the influence exercised on them by the severity of surgical stress…

OBJECTIVE: To describe doctors' prognostic accuracy in terminally ill patients and to evaluate the determinants of that accuracy. DESIGN: Prospective cohort study. SETTING: Five outpatient hospice programmes in Chicago. PARTICIPANTS: 343 doctors…

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This…

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…

A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…

BACKGROUND AND OBJECTIVE: Small pilot studies support the appropriateness of engaging adolescents with chronic or life-limiting illnesses in pediatric advance care planning (pACP). We do not yet know if pACP is acceptable, feasible, and worthwhile,…

OBJECTIVE: We reviewed our decisions about continuation/withdrawal of life-sustaining treatments in a group of critically ill newborns who were discussed in structured medical ethical decision-making meetings, and provide the surviving children's…

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…

PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W)…

OBJECTIVES: This study was conducted to determine how the decision-making process to forgo life support differs between southern and northern European pediatric intensive care units. DESIGN: Multiple-center, prospective study. SETTING: Thirty-nine…

OBJECTIVES: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed…

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…

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…

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…

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…

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…
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