Browse Items · Pediatric Palliative Care Library

Virtual Bereavement Support Program in a Children's Hospice Care Center During COVID-19 Pandemic and Beyond

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the…

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…

Building a programme theory of a specialist paediatric palliative and hospice care programme: development process and methodological reflection

Background: Paediatric palliative and hospice care aims to improve the quality of life of children with life-limiting and life-threatening conditions and their families. The number of these patients has risen significantly in recent years, resulting…

Why Are we Giving up on my Brother?-The Unmet Needs of the Adolescent Facing End-of-Life Care in a Sibling

Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling.…

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

Pediatric Palliative Care of a Transgender Adolescent

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as…

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…

First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review

Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without…

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…

Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review

Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a…

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…

Moral Distress and Pediatric Palliative Care

Moral distress is a complex phenomenon whereby a person feels tension, constraint, or conflict with an action or circumstance because it goes against their individual or the perceived collective (e.g., community, organizational, or professional…

Challenges in Home-Based Pediatric Hospice and Palliative Care: A Case Series

Pediatric home-based hospice and palliative care is a growing and important sub-field within the larger pediatric palliative care landscape. Despite research demonstrating the clinical and systemic efficacy of pediatric home-based hospice and…

Everyday Ethics or Deference to Expertise: Experiences of Pediatric Palliative Care Teams with Ethics Consultancy

Background: Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Objective: Describe the extent to which PPC team members serve…

Non-invasive respiratory support in children and young adults with complex medical conditions in pediatric palliative care

Objective: Dyspnoea and sleep-disordered breathing (SDB) are common in children with life-limiting conditions but studies on treatment with non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) are scarce. The aim of the study…

Feasibility of a Serious Illness Communication Program for Pediatric Advance Care Planning

Importance: Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. Objectives: To determine the…

Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale

The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese…

Mortality following admission to the paediatric intensive care unit: A Swedish longitudinal cohort study

Aim: This study aimed to compare outcomes post-admission to a Swedish paediatric intensive care unit (PICU) in children with complex chronic conditions (CCC) and without CCC. Methods: In this observational registry-based study, consecutive admissions…

Tags: 2024, Acta Paediatrica, Complex Chronic Conditions, Daham S, Eksborg S, Hamrin TH, Larsson E, Mortality, paediatric index of mortality, Paediatric Intensive Care, prediction models, September List 2024

Managing CHD in Tertiary NICU in Collaboration with a Cardiothoracic Center

Increasingly non-cardiac tertiary neonatal intensive care units (NCTNs) manage newborns with CHD prior to planned transfer to specialist cardiac surgical centres (SCSC). It improves patient flow in SCSCs, enables families to be nearer home, and…

Tags: 2024, adenosine/pv [Special Situation for Pharmacovigilance], Article, Artificial Ventilation, Birth Weight, Cardiologist, Cardiomyopathy, cardioversion, Chee YH, Congenital Heart Disease, diuretic agent/dt [Drug Therapy], diuretic agent/pv [Special Situation for Pharmacovigilance], Drug Withdrawal, Dunning-Davies B, flecainide/pv [Special Situation for Pharmacovigilance], Gestational Age, heart arrhythmia, heart failure/dt [Drug Therapy], heart tumor, Human, isoprenaline/pv [Special Situation for Pharmacovigilance], Kelsall W, Low Birth Weight, Male, Neonatal Intensive Care Unit, Newborn, Observational Study, Oxygen Therapy, Pediatric Cardiology, Pregnancy, Prematurity, propranolol/pv [Special Situation for Pharmacovigilance], prostaglandin E2/pv [Special Situation for Pharmacovigilance], Psychological Well-being, Retrospective Study, September List 2024, Singh Y, supraventricular tachycardia, tertiary care center, Yates R

The impact, perceptions and needs of parents of children with epidermolysis bullosa

Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a…

Scoping Review on Transitions in the Context of Pediatric Palliative Care

Background: Children with complex and chronic conditions receiving palliative care will likely experience many transitions during their life and their treatments. Transition periods for children with life-limiting conditions and their families can be…

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 spiritual dimension of parents' experiences caring for a seriously ill child: an interview study

Background: Parents of children with life-threatening conditions may have to balance their personal, family, and professional lives in the anticipation of child loss and the demands of providing medical care for their child. The challenges these…

Who, What, Where, and How? The State of Family Science in Pediatric Palliative Care

Context: Families are vital providers and recipients of pediatric palliative care (PPC) services. Understanding the scope and nature of evidence at the intersection of family science and PPC research is necessary to develop family-focused…

Care, connection, and social distancing: The challenges of baby loss during the COVID-19 pandemic in Aotearoa New Zealand

Problem: The COVID-19 pandemic hindered access to routine healthcare globally, prompting concerns about possible increases in pregnancy loss and perinatal death. Background: PUDDLES is an international collaboration exploring the impact of the…

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…

Comorbid ADHD and Pediatric Sickle Cell Disease: Prevalence and Risk Factors

Sickle cell disease (SCD) is a genetic blood condition that places youth at increased risk for deficits in complex attention suggestive of increased risk for Attention-Deficit/Hyperactivity Disorder (ADHD). We used systematic screening to assess the…

Tags: 2024, Adhd, Bills SE, Gillooly E, Johnston JD, Journal Of Clinical Psychology In Medical Settings, Neurodevelopmental Outcomes, Schatz J, September List 2024, sickle cell disease, Social–environmental factors, Systemic inflammation, Varanasi S

Living-loss: A narrative synthesis review of the grief process in parents

Problem: Realizing that a child has a lifelong developmental condition like Autism Spectrum Disorder (ASD) can create feelings of sadness and grief for the parents. It remains unclear, however, how parents deal with and understand these emotions. The…

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