Browse Items · Pediatric Palliative Care Library

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…

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…

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

Place of death and palliative care following discharge from paediatric intensive care units

OBJECTIVE: To determine where children die following discharge from paediatric intensive care units (PICUs) in Great Britain and to investigate if this varies by discharge to palliative care. DESIGN: National cohort of PICU admissions linked to…

Physiological changes, plasma beta-endorphin and cortisol responses to tracheal intubation in neonates

Physiological, plasma beta-endorphin and cortisol responses to nasotracheal intubation were studied in 20 distressed infants of median age 0.3 days (range 0.1-23 days) randomized into groups given pethidine 1 mg/kg (n = 10) or alfentanil 20…

Pharmacokinetics of continuous infusions of fentanyl in critically ill children

OBJECTIVE: To determine the pharmacokinetics of fentanyl when used as a long-term continuous infusion for sedation/analgesia in mechanically ventilated critically ill infants and children. DESIGN: Prospective, case series. SETTING: A university…

Period prevalence of epilepsy in children in BC: a population-based study

BACKGROUND: Most estimates of the prevalence of seizure disorders in Canada derive from national surveys which differ in sampling and case-finding methods. This study used health care utilization data to make a population-based estimate of the…

Perinatal palliative care: a developing specialty

Neonates and babies have the highest death rate in the paediatric population. Perinatal palliative care aims to enhance the quality of life of babies with a life-limiting condition and their families. However, very little data is available on…

Tags: 2014, Argentina, Backlog, Decision Making, Doumic L, Humans, Infant, International Journal of Palliative Nursing, Journal Article, Kiman R, Newborn, Organizational Case Studies, Palliative Care, perinatology, Specialization

Perinatal palliative care

Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family.…

Perinatal mortality: assisting parental affirmation

The health professional's role does not cease with perinatal death, but shifts towards the prevention of postmortem psychiatric sequelae in the parents. A multidisciplinary bereavement service has found that an increased awareness of the final…

Tags: 1978, Adaptation, Backlog, Burial, Cohen L, Female, Fetal Death/psychology, Humans, Infant, Journal Article, Middleton J, Newborn, O'Donnohue N, Pregnancy, Psychological, The American Journal Of Orthopsychiatry, Zilkha S

Perinatal loss. A critique of current hospital practices

Dramatic improvements in the hospital management of perinatal loss have taken place in the past 20 years. However, there has been no critical examination of current approaches. Four possible hazards of current hospital practice are described: 1)…

Perception of health professionals about neonatal palliative care

Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern…

Tags: 2019, Attitude Of Health Personnel, Batoca Silva E M, Content Analysis, Human, Infant, Intensive Care Units, January 2020 List, Machado Silva M J, Marques Silva D, Neonatal, Newborn, Palliative Care -- In Infancy and Childhood, Phenomenological Research, Portugal, Professional-patient Relations, Qualitative Studies, Quality Of Life, Revista Brasileira de Enfermagem

Pediatricians' attitudes affecting decision-making in defective newborns

A questionnaire designed to identify the factors that influence the resolution of ethical dilemmas was returned by 230 (57% of the total) Massachusetts pediatricians. The decision to recommend surgery for an infant with Down's syndrome with duodenal…

Pediatric uses of opioids

It is evident that opioids are underused in infants and children, mainly owing to the erroneous belief that long-term adverse effects may result from effective use, coupled with the difficulties infants and children have in verbalizing their feelings…

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