Browse Items · Pediatric Palliative Care Library

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…

Survival without disability to age 5 years after neonatal caffeine therapy for apnea of prematurity

CONTEXT: Very preterm infants are prone to apnea and have an increased risk of death or disability. Caffeine therapy for apnea of prematurity reduces the rates of cerebral palsy and cognitive delay at 18 months of age. OBJECTIVE: To determine whether…

Tags: 2012, Anderson PJ, Apnea/drug therapy, Asztalos EV, Backlog, Barrington KJ, Blindness/epidemiology/etiology/prevention & control, Caffeine/adverse effects/therapeutic use, Central Nervous System Stimulants/adverse effects/therapeutic use, Cerebral Palsy/epidemiology, Child, Child Development, Cognition Disorders/epidemiology/etiology/prevention & control, Davis PG, Deafness/epidemiology/etiology/prevention & control, Developmental Disabilities/epidemiology/etiology/prevention & control, Dewey D, Doyle LW, Female, Follow-up Studies, Grunau RE, Humans, Incidence, Infant, JAMA, Journal Article, Male, Moddemann D, N2N, Newborn, Odds Ratio, Ohlsson A, Premature, Preschool, Roberts RS, Schmidt B, Solimano A, Survival Analysis, Tin W, Treatment Outcome, Trial Investigators Caffeine for Apnea of Prematurity (CAP), Very Low Birth Weight

Survival in trisomy 13 and trisomy 18 cases ascertained from population based registers.

Survey on Neonatal End-of-Life Comfort Care Guidelines Across America

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

Summary proceedings from the neonatal pain-control group

Recent advances in neurobiology and clinical medicine have established that the fetus and newborn may experience acute, established, and chronic pain. They respond to such noxious stimuli by a series of complex biochemical, physiologic, and…

Studies on nutrition in severely neurologically disabled children in an institution

Severe neurological handicaps in children are frequently accompanied by growth retardation. We have studied 13 severely neurologically impaired children in an institution to see if their poor growth was related to a low intake of energy and…

Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73)…

Sorting through the haystack--decision analysis and the search for heart disease among children with murmur

2002

Tags: 2002, Adolescent, Adult, Backlog, Child, Child welfare, Cost-Benefit Analysis/economics, Danford DA, Decision Support Techniques, Heart Diseases/diagnosis/economics, Humans, Infant, Infant Welfare, Journal Article, Newborn, Preschool, Sensitivity and Specificity, The Journal Of Pediatrics

Something must happen before first breath

BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have…

Tags: 2021, Bmc Medical Ethics, Brain’s activation, Brain’s development, Extrauterine environment, Fagioli M, Fiori Nastro P, First breath, Foetus, Human birth, Infant, July 2021 List, Newborn, Polese D, Virgili F

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,…

Sleep disturbances in children, adolescents, and young adults with severe psychomotor impairment: impact on parental quality of life and sleep

AIM: In childhood, severe psychomotor impairment (SPMI) is associated with profound sleep disturbances. With the help of newly developed and validated measures, we systematically assessed how much a child's sleep disturbance affects parental sleep…

Sleep disturbance in Sanfilippo syndrome: a parental questionnaire study

AIMS: To determine the incidence, manifestations, and best management of sleep disturbance in Sanfilippo syndrome (mucopolysaccharidosis (MPS) type III). METHODS: Families were ascertained through the MPS societies of Australasia, the UK, and the…

Shifting place of death among children with complex chronic conditions in the United States, 1989-2003

CONTEXT: The place where children with complex chronic conditions are dying may be shifting toward residential homes due to the evolving epidemiology of life-threatening childhood conditions, advances in home-based medical technology, and changes in…

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Seeking and using families' views to shape children's hospice services

Child and family involvement is key to improving the quality of children's hospice services. This article reports on a quality assurance initiative undertaken as one component of a clinical governance strategy. Service users participated in focus…

Scoring evaluation of the natural course of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A)

OBJECTIVE: Mucopolysaccharidosis types IIIA through IIID (Sanfilippo syndrome) are caused by deficiencies of enzymes involved in the degradation of heparan sulfate. The onset and severity of the disease are highly variable. The purpose of this study…

Risk factors for long intensive care unit stay after cardiopulmonary bypass in children

OBJECTIVES: To determine whether children who experience longer intensive care unit (ICU) stays after open heart surgery may be identified at admission by clinical criteria. To identify factors associated with longer ICU stays that are potential…

Rising national prevalence of life-limiting conditions in children in England.

BACKGROUND: Life-limiting conditions (LLCs) describe diseases with no reasonable hope of cure that will ultimately be fatal. For children with these diseases, palliative care services should be available but few data are available to estimate the…

Review of pediatric autopsies performed at a university hospital in Ribeirao Preto, Brazil

CONTEXT: Autopsy continues to provide important data for quality assurance, teaching, scientific purposes, and health planning, especially if performed according to a comprehensive protocol. OBJECTIVE: To describe and analyze data from all perinatal…

Retrospective, multicentric study of 180 children with cytochrome C oxidase deficiency

A retrospective, multicenter study of 180 children with cytochrome c oxidase (COX) deficiency analyzed the clinical features, prognosis, and molecular bases of the COX deficiency. Clinical symptoms including failure to thrive, encephalopathy,…

Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents and all those who care for them: A systematic scoping review

BACKGROUND:: In planning high-quality research in any aspect of care for children and young people with life-limiting conditions, it is important to prioritise resources in the most appropriate areas. AIM:: To map research priorities identified from…

Tags: 2018, Adolescent, Beresford B, Booth A, Child, Consensus, Delphi Technique, Fraser L, Humans, Infant, January 2019 List, Maddison J, Newborn, Palliative Care, Palliative Medicine, Wright K

Research in children: ethical and scientific aspects

Reducing Perinatal Mortality in Nepal Using Helping Babies Breathe

BACKGROUND AND OBJECTIVE: Newborns are at the highest risk of dying around the time of birth, due to intrapartum-related complications. Our study's objective was to improve adherence to the Helping Babies Breathe (HBB) neonatal resuscitation protocol…

Recruiting bereaved parents for research after infant death in the neonatal intensive care unit

Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their…

Rapid painless diagnosis of viral respiratory infection

The concordance of nasal compared with nasopharyngeal swabs was assessed for the diagnosis of respiratory viral infections, and the degree of discomfort associated with each procedure was compared. The use of nasal swabs was shown to be as accurate…

Quality of life for children with life-limiting and life-threatening illnesses: description and evaluation of a regional, collaborative model for pediatric palliative care

The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…

Qualitative Study of Nurses' Experiences as They Learned to Provide Neonatal Palliative Care

Objective: To describe the experiences of nurses as they learned to provide palliative care in the NICU. Design: Interpretive description. Setting: Four NICUs in three Canadian provinces, including one rural center and three tertiary centers.…

Public Attitudes Toward Ethics and Practices in End-of-Life Decision-Making for Neonates

Importance: Attitudes toward end-of-life decision-making in neonatology have been studied in physicians and other health care professionals and are mostly shaped by their clinical education and work experiences. In contrast, attitudes among the…

Psychological support in end-of-life decision-making in neonatal intensive care units: Full population survey among neonatologists and neonatal nurses

Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.…

Prognosis for survival and improvement in function in children with severe developmental disabilities

OBJECTIVE: To derive prognostic data for survival and clinical improvement in children with severe developmental disabilities. STUDY DESIGN: A 13-year follow-up study of several cohorts of children initially evaluated before their first birthday. The…

Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care

BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by…

Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs

OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic…

Prevalence and morbidity associated with non-malignant, life-threatening conditions in childhood

OBJECTIVE: To determine the prevalence of non-malignant life-threatening illness in childhood and associated morbidity in the affected child and their family members. DESIGN: Cross-sectional survey. SETTING: Bath Clinical Area (total population…

Predictors of husbands' and wives' grief reactions following infant death: the role of marital intimacy

This follow-up study examined how bereaved couples' grief reactions change over time and how the quality of the marriage can predict these reactions for men and women. A group of 31 bereaved couples who 2 to 4 years earlier had lost an infant (…

Tags: 1996, Amsel R, Backlog, Death studies, Fetal Death, Follow-up Studies, Gottlieb LN, Grief, Humans, Infant, Infant Mortality, Journal Article, Lang A, Marriage, Newborn, Parent caregivers, Questionnaires, Spouses/psychology

Prediction of pediatric death in the year after hospitalization: a population-level retrospective cohort study

BACKGROUND: The study of how the quality of pediatric end-of-life care varies across systems of health care delivery and financing is hampered by lack of methods to adjust for the probability of death in populations of ill children. OBJECTIVE: To…

Postoperative epidural analgesia with bupivacaine and fentanyl: hourly pain assessment in 348 paediatric cases

BACKGROUND: The objective of this prospective study was the evaluation of the analgesia provided by an epidural infusion of bupivacaine and fentanyl after different types of surgery in children. METHODS: Data were collected from 348 epidural…

Postmortem computed tomography imaging in the investigation of nontraumatic death in infants and children

OBJECTIVE: To determine the accuracy of postmortem computed tomography (PMCT) for the assessment of causes in nontraumatic deaths in children. STUDY DESIGN: We enrolled cases of nontraumatic deaths of infants and children who underwent PMCT at a…

Tags: 2013, Autopsy, Backlog, Biomed Research International, Child, Death, Female, Humans, Ikeda S, Infant, Journal Article, Kaneko K, Kawasaki H, Kurokawa H, Male, Newborn, Noda Y, Ohashi A, Preschool, Tanigawa N, Tomography, Tsuji Shoji, X-Ray Computed, Yoshimura K

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