Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 1751–1775 of 4332 publications
Longitudinal Perinatal Palliative Care for Severe Fetal Neurologic Diagnoses
Perinatal palliative care (PnPC) focuses on enhancing family and newborn quality-of-life in the setting of a life-limiting fetal condition while simultaneously ensuring medical care delivery that is soundly in line with the family's goals and values. The inclu…
Long Term Support of Children with Life-Threatening Disease - Summary of the First Two Years of the Pediatric Palliative Care Service in Shaare Zedek Medical Center Jerusalem
INTRODUCTION: Palliative care involves management of medical, psychological, mental and social symptoms of children with life-threatening illnesses.
AIMS: The article describes the organization and function of a multidisciplinary palliative care service within…
Long-Term Ventilation in Children with Medical Complexity: A Challenging Issue
Children with medical complexity (CMCs) represent a subgroup of children who may have congenital or acquired multisystemic disease. CMCs are frequently predisposed to respiratory problems and often require long-term mechanical ventilation (LTMV). The indicatio…
Looking back: Identifying supportive care and unmet needs of parents of children receiving specialist paediatric palliative care from the bereavement perspective
BACKGROUND: This study examined care needs and utilisation of psychosocial support services among parents of children who had received specialist paediatric palliative care, as well as the relationship between need fulfilment and grief. Possible differences be…
Low-Resource Emergency Department Visits for Children With Complex Chronic Conditions
OBJECTIVE: Reducing emergency department (ED) use in children with complex chronic conditions (CCC) is a national health system priority. Emergency department visits with minimal clinical intervention may be the most avoidable. We assessed characteristics asso…
Making room for life and death at the same time - a qualitative study of health and social care professionals' understanding and use of the concept of paediatric palliative care
BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC an…
Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools
BACKGROUND: The circumstances and care provided at the end of a child's life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high qu…
Medication Order Errors at Hospital Admission Among Children With Medical Complexity
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 experiencing MOE…
Metaphors that shape parents' perceptions of effective communication with healthcare practitioners following child death: a qualitative UK study
OBJECTIVES: To offer an interpretation of bereaved parents' evaluations of communication with healthcare practitioners (HCPs) surrounding the death of a child. DESIGN: Interpretative qualitative study employing thematic and linguistic analyses of metaphor embe…
Minding the Gap: Sustaining Pediatric Palliative Care Teams in High Demand (FR244)
Outcomes
1. Discuss common factors that lead to mismatch between the clinical demand and available workforce in pediatric palliative care (PPC)
2. Examine the relative merits of heroics versus sustainability and boundaries in medical culture
3. Summarize…
Moral equivalence theory in neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rat…
Mortality During Readmission Among Children in United States Children's Hospitals
OBJECTIVE: To identify demographic, clinical, and hospital factors associated with mortality on readmission within 180 days following an inpatient hospitalization. STUDY DESIGN: We conducted a retrospective cohort study including 33 US children's hospitals in …
Multidisciplinary Clinician Perspectives on Embedded Palliative Care Models in Pediatric Cancer
CONTEXT: Integration of palliative care (PC) into pediatric cancer care is considered best practice by national oncology and pediatric organizations. Optimal strategies for PC integration remain understudied, although growing evidence suggests that embedded mo…
Multidisciplinary Health Care Professionals' Perceptions About Pediatric End of Life Discussions: A Cross-Sectional Survey and Needs Analysis
BACKGROUND: Pediatric end of life (EOL) care involves complex coordination of providers from multiple disciplines. Many of these providers' experiences have not been completely described. AIM: This study aims to explicate the alignment and divergence of health…
Multidrug-resistant organisms in paediatric palliative care patients - Prevalence, risk factors and the impact of a liberal hygiene concept
Aim: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, sing…
National survey of sibling support services in children's hospitals
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for …
Nationwide Study of Continuous Deep Sedation Practices Among Pediatric Palliative Care Teams
Context Palliative sedation practices evolved in France when the Claeys-Leonetti law passed in 2016 authorized patient-requested continuous deep sedation (CDS) until death. Its implementation in the pediatric setting is less frequently encountered and can pose…
Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth
Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent mechanisms.…
Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive car…
Neonatal palliative care practices: an Indian perspective
Background: Neonatal palliative care (NPC) aims to prevent and relieve the suffering of neonates who are not going to recover. Although an integral part of neonatal care, it remains in nascent stages in many parts of the world. Aim(s): To describe neonatologis…
New insights in pediatrics in 2021: choices in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, haematology, infectious diseases, neonatology, neurology, nutrition, palliative care, respiratory tract illnesses and telemedicine
In this review, we report the developments across pediatric subspecialties that have been published in the Italian Journal of Pediatrics in 2021. We highlight advances in allergy and immunology, critical care, endocrinology, gastroenterology, genetics, hematol…
NICU nurses' moral distress surrounding the deaths of infants
BACKGROUND: As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients' deaths and consequently experience burno…
Normalization of Symptoms in Advanced Child Cancer: The PediQUEST-Response Case Study
Context: Children, adolescents and young adults with cancer continue to experience significant symptom suffering throughout their illness. Objective(s): To identify barriers to effective symptom management in pediatric advanced cancer. Method(s): Using a quali…