Browse Items · Pediatric Palliative Care Library

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…

HELPING THE HELPERS - SUPPORT IN CHILD BEREAVEMENT FOR PAEDIATRIC HEALTH CARE STAFF

Objectives Around 70% of children with life-limiting conditions will die in hospital,1 meaning many paediatric staff will encounter death during their clinical duties. Observing and experiencing grief around a child's death can have a detrimental…

A Nationwide Study to Evaluate Accessibility to Specialized Pediatric Palliative Care in Italy-Patients, Needs, and Critical Issues: The PalliPed Study

Background: PalliPed is the first Italian nationwide project aimed at describing the characteristics of patients accessing specialized pediatric palliative care (PPC) and their families, in the main care settings (hospice, home care, and hospital).…

Tags: 2024, Adolescent, Agosto C, Albanesi B, Amarri S, Article, Avagnina I, Barbugian E, Basile R, Bellagamba O, Bellini F, Beltrami C, Benini F, Bignamini E, Bolognani M, Campagna M, Carraro C, Catalano G, Catalano I, Celentano L, Child, Controlled Study, De Marinis MG, De Tommasi V, De Zen L, Di Nunzio S, Diagnosis, Divisic A, Dolcini A, family support, Fasson A, Franchi F, Ghiraldo G, Giacomelli L, Grigolon E, Health Care Personnel, Home Care, Human, Iadelica A, Infant, Italy, Journal of Palliative Medicine, Lazzarin P, Maghini I, Manfredini L, Marinetto A, Maternal care, Mazzoni E, Mercante A, Michelotto E, Mirone R, Molinaro G, Moliterni P, Moro N, October List 2024, Orofino R, Palliative Therapy, Paone G, Papa S, Patient Referral, Pediatrician, Pellegatta F, Peruselli C, Piccolruaz UV, Prenatal Care, Raspi M, Roverato B, Salata M, Santini A, Schiavon B, Soffritti S, Taucar V, terminal disease, Thaler M, Therapy, Tornesello A, Uez F, Vaccher S, Vezzoli C, Young Adult, Zanin A, Ziggiotto S

Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers

BACKGROUND: Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but…

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…

Stress Among Parents of Children With Severe Neurological Impairment in the Pediatric Intensive Care Unit

Background: Children with severe neurological impairment (SNI) often receive care in the pediatric intensive care unit (PICU), yet little is known about their parents' experiences. Objective(s): To examine sources of and changes in stress among…

Tags: 2024, Adolescent, Adult, Article, Barton KS, Bogetz J, brain ventricle peritoneum shunt, Child, Child Parent Relation, Clinical Article, Cohort Analysis, confusion (uncertainty), Controlled Study, Disease Severity, ethnic background, Father, feeding tube, Female, Health Survey, Home Care, Hospital Admission, hospital discharge, Human, implanted vagus nerve stimulator, intrathecal baclofen pump, Journal of Palliative Medicine, legal guardian, Length Of Stay, Life Expectancy, Male, mortality risk, Neurodisability, noninvasive positive pressure ventilation, October List 2024, Oslin E, Palliative Therapy, Parental Stress, Patient Advocacy, Pediatric Hospital, Pediatric Intensive Care Unit, Personal Experience, Prospective Study, Qualitative Research, Quantitative Study, Rosenberg AR, Semi Structured Interview, Tracheostomy, Trowbridge A, United States, VULNERABILITY, Watson RS, Yi-Frazier J

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):…

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…

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…

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…

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…

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…

Self-Assessed Educational Needs of Chinese Pediatric Clinicians Regarding Pediatric Palliative Care: A Cross-Sectional Investigation

Background: An important first step in enhancing professional palliative care training is to investigate the educational needs of pediatric clinicians in this field. The aims of this research were to analyze the extent of end-of-life care experience…

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…

Spiritual Care in PICUs: A U.S. Survey of 245 Training Fellows 2020-2021*

OBJECTIVES: To understand the perspectives of pediatric fellows training in critical care subspecialties about providing spiritual care. DESIGN: Cross-sectional survey of United States National Residency Matching Program pediatric fellows training…

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…

Parent and Provider Perspectives of Clinical Outcomes of Critically Ill Children

INTRODUCTION: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV).…

Paediatric Palliative Care and Anticipatory Prescribing: Just Wasteful Are We?

Aims A fundamental right for patients and their families presented with life-limiting condition, is maintaining choice, in terms of place of care and of death, with evidence to suggest that most patients and their families would prefer home.1…

Children with palliative care needs - the landscape of the nordic countries

Background: To strengthen palliative care for children in the Nordic countries, an updated status of current needs, resources, clinical services, education, and research is necessary to align and consolidate future research. A Nordic research…

The Effect of Neonatal Intensive Care Nurses' Attitudes Towards Palliative Care on Death Anxiety and Burnout: An Analytic Cross-Sectional Study

This study aimed to determined the effect of neonatal intensive care nurses' attitudes towards palliative care on death anxiety and burnout. This was an analytic cross-sectional study conducted with 215 neonatal intensive care nurses working a…

Advance Care Planning for Children With Rare Diseases: A Pilot RCT

Background and objective: Pediatric rare diseases are often life-limiting conditions and/or require constant caregiving. Investigators assessed the initial efficacy of the FAmily CEntered (FACE) pediatric advance care planning (pACP), FACE-Rare,…

Knowledge, attitudes and practices of critical care unit personnel regarding pediatric palliative care: a cross-sectional study

Background: Few studies have evaluated the perceptions of healthcare providers in China regarding pediatric palliative care, particularly in critical care units (PICUs), where many children receive palliative care. To evaluate the knowledge,…

The impact of specialized pediatric palliative care on advance care planning and healthcare utilization in children and young adults: a retrospective analysis of medical records of in-hospital deaths

Background: Pediatric palliative care supports children and young adults with life-limiting conditions and their families, seeking to minimize suffering and enhance quality of life. This study evaluates the impact of specialized palliative care (SPC)…

Factors associated with family decision-making after pediatric out-of-hospital cardiac arrest

Aim: This study aims to identify demographic factors, area-based social determinants of health (SDOH), and clinical features associated with medical decision-making after pediatric out-of-hospital cardiac arrest (OHCA). Methods: This is a…

Meaningful Display of Legacy Items Among Families Experiencing a Perinatal, Neonatal, or Infant Death

Outcomes: 1. Discuss how families use perinatal palliative legacy items after they return to the community. 2. Understand how perinatal palliative legacy items can affect deceased infant identity in the family. Key Message: Current literature does…

Understanding and Optimizing Rest and Rejuvenation for Family Caregivers of Children with Medical Complexity

Outcomes: 1. Participants will be able to define and summarize the major themes characterizing CMC family caregivers' experiences of rest, rejuvenation, and respite and then illustrate examples of those themes from family caregivers' stories. 2.…

Effect of Family Centered Pediatric Advance Care Planning for Children with Rare Diseases on Meaning/Peace

Outcomes: 1. Know how advance care planning with families of children with rare diseases can improve family caregiver outcomes. 2. Understand the impact of race and social determinants of health on family caregiver appraisal of their caregiving and…

Improving Pediatric Residents' Comfort and Facility with End-of-Life Care with a Just-In-Time Online Module

Outcomes: 1. Participants will be able to learn how a just-in-time module can be constructed to address both resident needs and palliative care teaching goals. 2. Participants will be able to describe different ways in which a just-in-time module can…

Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field

Outcomes: 1. Utilizing a case-based approach plus content expert didactic presentation, participants will self-report ability to identify 3 defensive mechanisms utilized by caregivers and providers during shared decision making (SDM) that can…

Symptom Trajectories and Mortality Among Children Receiving Palliative Care: A Prospective Cohort Study

Outcomes: 1. Describe two major patterns of symptom trajectories over time among children receiving palliative care services. 2. Identify three clinical and research implications of the two major symptom trajectory patterns observed in pediatric…

Bereavement Needs Assessment of a Growing Pediatric Palliative Care Program

Outcomes: 1. Participants will be able to identify the impact current bereavement resources have on patients and families treated at our free-standing children's hospital. 2. Participants will be able to identify periods during bereavement where…

Preparing for the Unimaginable: How Pediatric ICU Nurses Prepare Families for the Dying Process

Outcomes: 1. Identify key actions that help prepare families for the dying process. 2. Consider how the defined key actions may apply to other settings of practice. Key Message: Preparing families for end-of-life symptoms and circumstances may help…

A Prospective Pilot Study of Longitudinal Parent Anxiety Screening: Implications for Data-Driven Palliative Care

Outcomes: 1. Utilizing single-case design and graphical analytic approaches, participants will self-report the ability to investigate prospective small-sample trends in anxiety symptom trajectories, individual variation over time, and clinically…

What are the anticipated benefits, risks, barriers and facilitators to implementing person-centred outcome measures into routine care for children and young people with life-limiting and life-threatening conditions? A qualitative interview study with key stakeholders

Background: There is a growing evidence-base underpinning implementation of person-centred outcome measures into adult palliative care. However evidence on how best to achieve this with children facing life-threatening and life-limiting conditions is…

Role of Pediatric Palliative Care in German-Speaking Centers for Heart Transplantation

Background: Pediatric palliative care (PPC) aims to improve quality of life for patients with life-limiting diseases and complex symptoms irrespective of cure-directed therapy. Generally an early integration of PPC is recommended. This is also the…

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