Browse Items · Pediatric Palliative Care Library

Children's and adolescents' perspectives on living with advanced cancer: A meta-synthesis of qualitative research

Parent-Clinician Communication and Prolonged Grief in Parents Whose Child Died from Cancer

CONTEXT: Parent-clinician communication is essential for high-quality end-of-life (EOL) care in children with cancer. However, it is unknown how parent-clinician communication affects parents' experience in the first two years after their child's…

Parental Attitudes Towards Palliative Care in Pediatric Oncology: Insights from Bereaved Families

CONTEXT: Palliative care (PC) has shown significant growth in the US and is associated with improved patient and caregiver experiences. Nevertheless, there are concerns that PC is underutilized in pediatric oncology. Understanding parental attitudes…

A Feasibility Study Examining Storytelling Through Music with Bereaved Parents of Children with Cancer (RP212)

Outcomes: 1. Participants will be able to demonstrate knowledge about the gaps in parental bereavement support. 2. Participants will be able to describe the feasibility and process of implementing a community-based expressive arts bereavement…

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort review

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known…

Development and Validation of a Ready-to-Talk Measure for Use in Adolescents and Young Adults Living With Advanced Cancer

Background: In the era of evolving and emerging therapies, adolescents and young adults (AYAs) living with advanced cancer experience a high degree of uncertainty, making palliative care and end-of-life (PCEOL) discussions difficult. Clinical…

Use of Cancer-Directed therapy at the end of life among adolescents and young adults

Background: Adolescents and young adults frequently receive chemotherapy near death. We know less about the use of targeted agents and immunotherapy or trends over time. Methods: We conducted a retrospective cohort study of 1836 adolescents and young…

Clinical and socio-demographic profile of children receiving pediatric palliative care in a tertiary hospital of a metropolitan city in India

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child's body, mind, and spirit and involves giving support to the family. According to the Global Atlas of…

Cross-sectional study of the perceived well-being of children in palliative care

Abstract Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs). Methods: We conducted a cross-sectional study in young people aged 8 years…

Palliative Care Outcomes for Critically ill Children After Rapid Whole Genome Sequencing

Abstract Objectives: Clinical utility of rapid whole genome sequencing (rWGS) has been reported in 30-70% of pediatric ICU patients who receive a molecular diagnosis. Rapid molecular diagnostic techniques have been increasingly integrated into…

Prevalence of pain in the last 2 weeks of life in hospitalized pediatric patients

Abstract Introduction: Pain is a very common symptom in children who have a complex, chronic, life-threatening or life-limiting disease, generating a negative impact on the quality of life of the child and his or her family. There is very limited…

The effect of musical-animated toys and audiobooks on fear and pain in the tracheostomy care of children in the palliative care

Abstract Objective: The study aimed to evaluate the effects of musical-animated toys and audiobooks on the fear and pain in the tracheostomy care of children in the palliative care clinic. Methods: The study design was a single-center, single-arm,…

Goals of Surgical Interventions in Youths Receiving Palliative Care

Importance: Most youths receiving palliative care undergo many surgical interventions over their lifetimes. The intended purposes of interventions in the context of goals of care are not commonly articulated. Objective: To describe the goals and…

Tags: 2024, adenoidectomy, Article, Assistive technology, Avery M, bone marrow aspiration, bone marrow biopsy, botulinum toxin/pv [Special Situation for Pharmacovigilance], bronchoscopy, Cancer Patient, cancer surgery, Cardiovascular Disease, central venous catheterization, cerebrospinal fluid shunting, Chemotherapy, Chen L, Child, Cohort Analysis, Controlled Study, dental procedure, Ellis DI, endoscopic biopsy, Endoscopy, February List 2025, Female, Genetic Disorder, Gordon Wexler S, heart catheterization, heart surgery, Human, JAMA Network Open, juvenile, Kaplan AJ, Kelleher C, Kim TD, laryngoscopy, life extension, lumbar puncture, Major Clinical Study, Male, Mazzola E, Neurologic Disease, Palliative Therapy, Patient Care, pediatric patient, pediatric surgery, phenol/pv [Special Situation for Pharmacovigilance], Retrospective Study, steroid therapy, steroid/pv [Special Situation for Pharmacovigilance], tenotomy, thorax surgery, Tonsillectomy, Tracheostomy, treatment indication, tympanostomy, Vascular Surgery, Wolfe J

Certified Child Life Specialists in Hospice and Palliative Care Organizations: A State of the Profession

Background: Certified Child Life Specialists (CCLSs) provide developmentally appropriate psychosocial care to children to promote positive coping. However, little is known about the current professional landscape and opportunities for professional…

Exploring the Role of Genetic Testing in Decisions to Redirect Care in Critically Ill Infants

OBJECTIVE: Genetic disorders are a major determinant of morbidity and mortality within neonatal intensive care units (NICUs). Studies have found genetic testing in critically ill infants may lead to changes in clinical decisions such as pursuing end…

Effect of timing of palliative care consultation on end-of-life care for children with advanced cardiac disease

Background: Pediatric patients with advanced cardiac disease often receive high intensity medical care at the end of life (EOL). Specialized pediatric palliative care (PPC) has been shown to improve symptom management and EOL goal-concordant care,…

A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care

Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our…

Tags: 2024, Adams S, Adolescent, Adult, Article, assisted ventilation, Caregiver, Checklist, Child Psychiatry, Children With Medical Complexity, chronicity, Chung C, Conversation, decision support system, Demographics, dietitian, Disability, Esser K, Family physicians, feedback system, General Practitioner, Health Care Access, Health Care Personnel, Health care transition, Health Care Utilization, Hospital, Human, Information Processing, Lee S, Major Clinical Study, McKay T, Medical Record Review, Medical Technology, Moore C, Multidisciplinary team, Multiple Chronic Conditions, November List 2024, Nurse Practitioner, Orkin J, Paediatrics And Child Health, Patient Care, pediatric patient, Pediatrician, Pediatrics, pharmaceutical care, pharmacist, Quality Improvement, Rehabilitation, School, Social Worker, standardization, Total Quality Management, Transition To Adult Care, vascular access, Wagman H

Evaluation of a perinatal palliative care program by SWOT analysis

Background: Perinatal Palliative Care (PPC) is individualized medical-nursing care aimed at improving the quality of life of newborns with life-limiting conditions and to support their families. This study draws on the analysis of the experience…

Context of death and end-of-life decision-making in paediatric patients with neurological conditions

Introduction and objectives: Death in children with neurological disease is usually complex and requires an interdisciplinary approach. Our aim was to describe the context of death in children with neurological disease according to the underlying…

DIVERSITY IN ETHNICITY AND MAIN SPOKEN LANGUAGE OF CHILDREN REFERRED TO A SPECIALIST PAEDIATRIC PALLIATIVE CARE SERVICE

Objectives To evaluate the diversity in ethnicity and main language spoken by children formally referred to a specialist paediatric palliative care service, and to compare this to both local and regional population demographics. Methods A…

DO CHILDREN AND YOUNG PEOPLE WITH LIFELIMITING CONDITIONS RECEIVE TIMELY PALLIATIVE CARE INPUT AND ADVANCE CARE PLANNING?

Objectives To assess the prevalence of advance care planning in children and young people with life limiting conditions who die on the paediatric intensive care unit. Methods We retrospectively audited data on children and young people who had died…

PERINATAL PALLIATIVE CARE REQUIREMENTS IN THE WEST MIDLANDS: A SERVICE EVALUATION PROJECT

Objectives We aimed to understand the population of pregnant people and babies who could benefit from an expanded perinatal palliative care service in the West Midlands, due to lifelimiting conditions in foetuses or babies. Methods We reviewed…

Quality of Care in the Last Two Years of Life for Children with Complex Chronic Conditions

CONTEXT: Limited data exists about care received by children with complex chronic conditions (CCCs) in the final years of their disease and end-of-life (EOL). OBJECTIVE(S): To examine hospital performance on EOL quality measures and to describe…

A RETROSPECTIVE AUDIT FOR PRE-HOSPITAL RESPECT DOCUMENTATION FOR CHILDREN WITH COMPLEX LIFE LIMITING NEURO-DISABILITY ADMITTED TO PAEDIATRIC INTENSIVE CARE UNIT

Objectives As per NICE guidelines [NG 61], children and young people with life limiting conditions and their carers or parents should have enough time and opportunities for discussions about difficult decisions around end-of-life care. A…

Suffering in children and adolescents in paediatric palliative care in Spain: Psychometric properties of the qESNA scale

Objective: To analyze the psychometric properties of the qESNA scale and its usefulness to assess the suffering of paediatric patients with life-limiting and/or life-threatening diseases (children with LLTC) in clinical practice. Method(s):…

THE WEST MIDLANDS PERINATAL PALLIATIVE CARE SERVICE AUDIT ON REFERRALS, DIAGNOSES AND PROGNOSES OF BABIES WITH SEVERE CONDITIONS

Objectives The West Midlands Perinatal Palliative Care Service based at Birmingham Women's and Children's NHS Hospital Trust is one of the busiest services in the UK after being in operation only 2 years. The service offers support to all West…

A protocol for neoWONDER: Neonatal whole population data linkage to improve long-term health and wellbeing of preterm and sick babies

Introduction Early-life medical and surgical interventions in babies born preterm and/or with surgical conditions influence later life health and educational outcomes. Obtaining long-term outcomes post-discharge to evaluate the impact of…

Tags: 2024, Adult, Article, attention deficit hyperactivity disorder, Aveline A, Battersby C, behavior change, breast feeding, breast milk, Cause Of Death, Cohort Analysis, community mental health, congenital diaphragm hernia, Databases Factual, date of birth, Developmental delay, Educational Status, England, Epidemiology, esophagus atresia, factual database, Female, gastroschisis, Gestational Age, Health Care Utilization, Hirschsprung disease, hospital discharge, hospital readmission, Human, Humans, Infant Newborn, Infant Premature, information retrieval, Information Storage and Retrieval, Length Of Stay, Major Clinical Study, Male, Mortality Rate, Necrotizing Enterocolitis, Newborn, newborn assessment, Newborn Care, newborn surgery, Pediatric Intensive Care Unit, place of birth, PLoS One, premature labor, Prematurity, Propensity Score, routinely collected health data, school attendance, September List 2024, van Blankenstein E, Wales, Wellbeing

The knowledge, attitude and behavior on the palliative care among neonatal nurses: what can we do

Background: Neonatal nurses should provide timely and high-quality palliative care whenever necessary. It's necessary to investigate the knowledge, attitude and behavior of palliative care among neonatal nurses, to provide references and evidences…

Permanent cutaneous vesicostomy: a pragmatic approach to safely manage lower urinary tract dysfunction in pediatric patients with chronic and life-limiting conditions and neuropathic bladders

Introduction: Lower urinary tract dysfunction (LUTD) in cerebral palsy (CP) and other neuromuscular diseases can present with chronic retention that leads to hydronephrosis, recurrent urinary tract infections (UTI), and stone formation. Whenever the…

Tags: 2024, Abdelmaguid N, Adolescent, Al Saeedi A, antibiotic agent, antibiotic prophylaxis, Article, bladder catheterization, bladder irrigation, bladder stone, Cerebral Palsy, Child, chronic life-limiting disease, Clinical Effectiveness, conservative treatment, Controlled Study, cutaneous vesicostomy, cystostomy, encephalomyelitis, Female, Follow Up, Frontiers in Pediatrics, Gross Motor Function Classification System, Human, Hydrocephalus, hydronephrosis, hydroureter, hypoxic ischemic encephalopathy, Khalil IA, Long Term Care, lower urinary tract dysfunction (LUTD), lower urinary tract symptom, Major Clinical Study, Male, Meningomyelocele, Mohamed RB, Muneer E, nephrolithiasis, neurogenic bladder, neurogenic bladder dysfunction, Neuromuscular Disease, neuropathic bladder, occult spinal dysraphism, Palliative Therapy, Patient Safety, Pippi Salle JL, Polypharmacy, postoperative complication, Postoperative Period, pragmatic trial, Preschool Child, quadriplegia, recurrent infection, Retrospective Study, School Child, September List 2024, Spinal Muscular Atrophy, stenosis, stoma, urinary tract infection, Vallasciani S, vesicostomy

Assessing Pediatric Resident Needs in Grief and Bereavement Education

Context: Pediatric residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. Objectives: This work…

Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis

Abstract The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two…

Exploring Pediatric Code Status, Advance Care Planning, and Mode of Death Disparities at End of Life

Context: Children from marginalized groups are at risk for worse medical outcomes, yet little is known about their end of life experiences. Objective: We examine the characteristics of deceased children with a focus on race, ethnicity, and preferred…

Trajectories in Intensity of Medical Interventions at the End of Life: Clustering Analysis in a Pediatric, Single-Center Retrospective Cohort, 2013-2021

Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various…

Prevalence and Mortality of Life-Threatening and Life-Shortening Diseases in Children and Adolescents in Germany

This study provides prevalence and mortality data for 0- to 19-year-old children and adolescents with medically documented life-threatening and life-shortening diagnoses in Germany. A secondary data analysis of more than 12 million insured persons…

The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties

Context: Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. Considerable variation, however, exists in the…

Place of death among children from 0 to 17 years of age: A population-based study from Sweden

Aim: The aim of this study is to contribute to the development of paediatric palliative care by investigating, on a population basis, where children in Sweden died, from 2013 to 2019. A particular focus was on comparing two groups: children who died…

Parent Preferences and Experiences in Advance Care Planning in the Neonatal Intensive Care Unit

Objective: Our objective was to evaluate the preferences and experiences of bereaved parents around advance care planning (ACP) in the neonatal intensive care unit (NICU). Study design: Single-center cross-sectional survey of bereaved parents who…

Parental quality of life as an outcome of specialised paediatric palliative care: results of the SPhAERA study

Background: The number of children and adolescents living with life-limiting conditions and potentially in need for specialised paediatric palliative care (SPPC) is rising. Ideally, a specialised multiprofessional team responds to the complex…

Tags: 2024, Adolescent, Anne-Kathrin G, August List 2024, Bereavement, Caregiver, Child, Comparative Effectiveness, conference abstract, Eva B, Health Care Personnel, Human, Karin Z, longitudinal study, Major Clinical Study, Male, Palliative Therapy, Quality Of Life, Swiss Medical Weekly

Death One Hour After Terminal Extubation (DONATE): A Multisite Cohort Study

INTRODUCTION: Predicting time to death after terminal extubation is valuable to augment family counseling and identify suitable candidates for organ donation after circulatory death (DCD). Our objective was to train and validate a machine learning…

Pediatric palliative care for metabolic diseases: 20-year epidemiological survey of outpatients at a Brazilian quaternary hospital

The interface between pediatric palliative care (PPC) and inborn metabolic diseases (IMD) remains incipient, though these conditions fill the state of art of complex chronic diseases, eligible to this health approach. We analyzed the medical records…

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