Browse Items · Pediatric Palliative Care Library

Experiences with a national team-based learning program for advance care planning in pediatric palliative care

Background: Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the…

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…

Storytelling to support legacy making for bereaved parents of children with cancer

Honoring a child's legacy is an essential aspect of meaning-making for bereaved parents, yet little is known about storytelling as a mechanism. Through narrative analysis of 19 bereaved parent interviews focused on legacy, we examined the role of…

Experiences of Pediatric Palliative Care Among Bereaved Parents Who Lost a Child With Leukemia in South Korea

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…

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…

Realities and ideals: Experiences and needs of pediatric oncology nurses in communication processes with children and their families at the end-of-life period: A photovoice qualitative study

Effective communication in end-of-life care for pediatric cancer patients is crucial. Yet, limited research focuses on the communication experiences of pediatric oncology nurses during this period. This study aims to investigate the communication…

Exploring learners' perspectives of a pediatric palliative care tele-mentoring and education program (project Echo) in a resource-limited setting

INTRODUCTION/BACKGROUND: More than 98% of children who need palliative care live in low- or middle-income countries where access to palliative care is extremely limited. A lack of palliative care education for health care providers has been…

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…

Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data

Abstract Background: Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of…

Tags: 2025, Adolescent, Adult, Article, Child, Children, Controlled Study, Coombs S, Family Stress, Female, Human, Jaaniste T, Male, March List 2025, Palliative Therapy, Pilot Study, Potter S, Thematic Analysis, Therapy, Volunteer

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…

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,…

"Death is Not a Dirty Word:" A Qualitative Study of Emergency Clinician End-of-Life Communication

OBJECTIVES: Pediatric patients with life-limiting diagnoses frequently seek care in the pediatric emergency department (PED) during times of acute illness, or at end-of-life (EOL) . Although the population of patients with life-limiting diagnoses is…

DMD-YOUNG: paediatric palliative care for children with a slowly progressive neuromuscular disorder in transition to adulthood

Duchenne muscular dystrophy (DMD) is a severe genetic neuromuscular disease that causes progressive loss of muscle function. As life expectancy in DMD has gradually increased to a current median of 21-39 years, the disease serves as an example of…

Compassion fatigue and palliative care in neonatal nurses

Introduction: Neonatal intensive care units (NICUs) emerge as one of the areas where palliative care is most needed. This study was conducted to examine the attitudes and compassion fatigue levels of NICUs nurses working in Şanlıurfa, where the…

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

Pediatric Palliative Care Simulation Improves Resident Learning Outcomes: an 11-Year Review

Context: Many general pediatrics residents lack sufficient opportunities to conduct difficult conversations with families, particularly about end-of-life care. Simulation learning is an effective means of practicing professional skills. A pediatric…

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…

Demographic and clinical profile of children with congenital heart diseases receiving palliative care

Background: The role of pediatric palliative care (PPC) is well described in oncology, however, its involvement in children with congenital heart disease (CHD) is not well explored. Method(s): This prospective interventional study was conducted on…

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,…

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…

Browse Items (304 total)