Browse Items · Pediatric Palliative Care Library

The FATHER Model of Loss and Grief After Child's Life-Limiting Illness

Context: Loss of a child to a life-limiting condition (LLC) is 1 of the most traumatic life events for parents. Research focusing on fathers' experiences is in its infancy. Objectives: Using a meta-ethnographic approach, we systematically reviewed…

The Experience of Pediatric Palliative Caregiving: A Qualitative Analysis From the Photographs of Meaning Program

The Photographs of Meaning Program for pediatric palliative caregivers (POM-PPCG) is an innovative, meaning-based intervention utilizing photovoice and social media components. In 2017, 9 pediatric palliative caregivers participated in this…

The Emotional Experience of Caring for Children in Pediatric Palliative Care: A Qualitative Study among a Home-Based Interdisciplinary Care Team

The healthcare providers caring for children with life-threatening illnesses experience considerable compassion fatigue. The purpose of this study was to describe the feelings and emotions of professionals working in an interdisciplinary pediatric…

The efficacy of educational interventions on neonatal intensive care unit nurses knowledge and attitude toward neonatal palliative care

The effect of web-based pediatric palliative care education on the palliative care knowledge level and practices of nursing students

PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.

Tags: 2019, Akdeniz K A, Article, Bektas M, Child, Controlled Study, February 2020 List, Human, Human Experiment, Major Clinical Study, nursing student, Palliative Therapy, Pediatrics, Perspectives in psychiatric care, pretest posttest design

The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective

Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of…

The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology

Purpose: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members'…

The care for oncologic patients undergoing pediatric palliative care and the griefs of a health team

Introduction: The health care offered to children and adolescents with cancer has been expanded, giving space to orthothanasia and palliative care, with a comprehensive look at the subject facing the threat to the continuity of life, as well as…

The Butterfly Effect: Supporting Pediatric Trainee Bereavement Through a Condolence Card Project

As medical students and residents, we have all grappled with patient death and dying at some point in our training. These experiences often remain with us, informing our clinical practice, our personal wellbeing, and the ways in which we build…

The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience

Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care…

Talking about the End of Life, Death and Bereavement with Children's Literature

Abstract The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are…

Tags: 2022, Adolescent, Adult, April List 2023, Article, Bereavement, Child, Female, Human, Major Clinical Study, Male, mourning, Only Child, Palliative Therapy, Psycho-Oncology, Terminal Care, Tete C

Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcomes

Background: The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes. Objective: This review aims to identify symptoms, concerns and outcomes that matter to…

Survey on Neonatal End-of-Life Comfort Care Guidelines Across America

Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing…

Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers

Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada,…

Supporting parents while their child is receiving neurocritical care

The post-intensive care syndrome (PICS) concept whereby the ICU experience of the patient as well as their family can have long-term deleterious health outcomes in both the patient and the family provides a rationale and impetus for modifying the ICU…

Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental…

Supplementation with carnitine reduces the severity of constipation: A retrospective study of patients with severe motor and intellectual disabilities

Carnitine is an essential nutrient for the mitochondrial transport of fatty acids. Carnitine deficiency causes a variety of symptoms in multiple organs. Patients with severe motor and intellectual disabilities often have carnitine deficiency. This…

Tags: 102767-28-2 (levetiracetam), 1069-66-5 (valproic acid), 1309-48-4 (magnesium oxide), 1317-74-4 (magnesium oxide), 14093-02-8 (iron), 14378-32-6 (zinc), 146-22-5 (nitrazepam), 1622-61-3 (clonazepam), 2017, 22316-47-8 (clobazam), 298-46-4 (carbamazepine), 461-06-3 (carnitine), 50-06-6 (phenobarbital), 53858-86-9 (iron), 541-15-1 (carnitine), 56-99-5 (carnitine), 57-30-7 (phenobarbital), 57-88-5 (cholesterol), 59-30-3 (folic acid), 6484-89-5 (folic acid), 68291-97-4 (zonisamide), 7439-89-6 (iron), 7440-66-6 (zinc), 7782-49-2 (selenium), 8028-68-0 (phenobarbital), 8047-84-5 (carbamazepine), 84057-84-1 (lamotrigine), 99-66-1 (valproic acid), acute brain disease, Adult, albumin, albumin blood level, anticonvulsant therapy, Aomatsu T, Article, bacterial meningitis, bed rest, body mass, brain infarction, carbamazepine/dt [Drug Therapy], carnitine, carnitine deficiency, carnitine deficiency/dt [Drug Therapy], carnitine/dt [Drug Therapy], Cerebral Palsy, Child, cholesterol blood level, cholesterol/ec [Endogenous Compound], Clinical Article, Clinical Trial, clobazam/dt [Drug Therapy], clonazepam/dt [Drug Therapy], Constipation, constipation/dt [Drug Therapy], constipation/pc [Prevention], Controlled Study, copper blood level, cupric ion/ec [Endogenous Compound], diet supplementation, Disease Severity, Endogenous Compound, enema/dt [Drug Therapy], enteric feeding, epilepsy/dt [Drug Therapy], Female, folic acid, folic acid blood level, folic acid/ec [Endogenous Compound], Gene Expression, groups by age, Hospital, Human, Human Tissue, infantile spasm, Inoue K, Intellectual Impairment, iron blood level, iron/ec [Endogenous Compound], Journal of Clinical Biochemistry and Nutrition, lamotrigine/dt [Drug Therapy], levetiracetam/dt [Drug Therapy], magnesium oxide/dt [Drug Therapy], Male, Medical Record Review, Middle Aged, motor dysfunction, Murata S, NCL3, neuronal ceroid lipofuscinosis, nitrazepam/dt [Drug Therapy], Pelizaeus Merzbacher disease, Pelizaeus- Merzbacher disease, periventricular leukomalacia, pharmacologic intervention, phenobarbital/dt [Drug Therapy], prealbumin, prealbumin/ec [Endogenous Compound], Preschool Child, Retrospective Study, School Child, selenium blood level, selenium/ec [Endogenous Compound], sex difference, Tamai H, trace element, Tuberous Sclerosis, valproic acid, valproic acid/dt [Drug Therapy], West syndrome, Yoden A, Young Adult, zinc/ec [Endogenous Compound], zonisamide/dt [Drug Therapy]

Subthalamic Nuclei Stimulation in Patients With Pantothenate Kinase-Associated Neurodegeneration (PKAN)

Introduction: Pantothenate kinase-associated neurodegeneration (PKAN) is a rare autosomal recessive genetic disease that leads to extrapyramidal symptoms, such as dystonia, ataxia, dysarthria, and involuntary movements. Treatment of PKAN with deep…

Spiritual needs and communicating about death in nonreligious theistic families in pediatric palliative care: A qualitative study

Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss…

Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers

Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study…

Specialist perinatal palliative care: a retrospective review of antenatal referrals to a children's palliative care service over 14 years

Perinatal palliative care is an emerging branch of children's palliative care. This study sought to better understand the pattern of antenatal referrals and the role of a specialist paediatric palliative care (PPC) team in supporting families…

Social Workers in Pediatric Intensive Care Units: A Physician Perspective

Objective: The role of social workers, who are beginning to be integrated into the entire health system, is now becoming more and more understood. In our study, we aimed to discuss the duties of social workers at PICU, the results of their work in…

Social work practice in perinatal palliative care: an overview

Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning…

Social Media Consequences of Pediatric Death

Social media is an important access point for engagement of children and adolescents. For individuals with a life-limiting illness or serving as the caregiver for an ill child, social media can be a helpful outlet for support and information…

Tags: 2018, Adolescent, Article, Bereavement, Buxton DC, Caregiver, Child, Child And Adolescent Psychiatric Clinics Of North America, Death, Grief, Human, knee prosthesis, Pediatrics, September 2018 List, social media, Vest TR, videorecording

Sleep disorders in Cornelia de Lange syndrome

Cornelia de Lange syndrome (CdLS) is a rare genetic disorder characterized by growth retardation, intellectual disability, limb defects, typical facial dysmorphism, and other systemic involvement. Sleep disturbances have been frequently reported in…

Sleep abnormalities in untreated patients with mucopolysaccharidosis type VI

Mucopolysaccharidosis type VI (MPS VI) is a lysosomal storage disease that affects an enzyme responsible for the degradation of glycosaminoglycans (GAGs). Partially degraded GAGs accumulate in several tissues, such as the upper airways (UA), which…

Tags: 2011, American Journal of Medical Genetics Part A, anamnesis, apnea, Article, Azevedo A C, Barrios P, breathing difficulties, characteristics, Child, Clinical Article, Clinical Feature, Controlled Study, Cross-sectional Study, Dalcin P, disease association, Disease Severity, Doppler echocardiography, Fagondes S, Female, Giugliani R, Glycosaminoglycans, Human, John A, Lysosomal storage diseases, lysosome storage disease, macroglossia, Male, Maroteaux Lamy syndrome, Menna-Barreto S, Morquio syndrome, MPSVI, Mucopolysaccharidosis, oxygen saturation, oxygen/ec [Endogenous Compound], physical examination, pigeon thorax, Polysomnography, Preschool Child, Prevalence, Priority Journal, Prospective Study, pulmonary hypertension, Schwartz I, Sleep apnea, sleep apnea syndrome/di [Diagnosis], sleep disorder, snoring, Trajectory, witnessed apnea

Single-center Experience Providing Palliative Care To Pediatric Patients With End-stage Renal Disease

Background: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. Objective:…

Simulated learning for staff at a children's hospice: a quality improvement project

Simulated learning has well known positive effects but its use in palliative care education is limited. A quality improvement project was undertaken at a children's hospice to develop and evaluate simulation workshops. The aim was to increase the…

Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia

Background/objectives: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However,…

Shared decision-making in pediatric palliative care in the Netherlands

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals…

Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer

Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative…

Serious news communication between clinicians and parents impacts parents' experiences, decision-making, and clinical care for critically ill neonates

Physicians often disclose serious news with patients and families; however, many clinicians experience anxiety around these conversations.1 Fear of their patients' and their own emotional reactions may cause providers to avoid these conversations…

Role of general practitioners in palliative care for children with cancer

Tags: 2017, Article, Cancer Palliative Therapy, Childhood Cancer, Dees M, General Practitioner, Huisarts En Wetenschap, Human, Oncology 2017 List

Rights of the Dying Child: The Nurses' Perception

Aim: The Charter of the Rights of the Dying Child was formulated as a professional guide for caring the child in the final stages. The study examines the nurses' degree of agreement with the Charter's principles and their perception of the…

Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research

OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has…

Relevance of Potential Contributing Factors for the Development and Maintenance of Irritability of Unknown Origin in Pediatric Palliative Care

Potential contributing factors (PCFs) for irritability of an unknown origin (IUO) in children with neurological conditions are identifiable through structured diagnostics. Uncertainty exists regarding the actual relevance of identified PCFs to IUO.…

Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty

Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty.…

Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study

OBJECTIVES: Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a…

Regional perspectives on the coordination and delivery of paediatric end-of-life care in the UK: a qualitative study

Background: Provision of and access to paediatric end-of-life care is inequitable, but previous research on this area has focused on perspectives of health professionals in specific settings or children with specific conditions. This qualitative…

Real World Presentation and Treatment Outcomes with a Predominant Induction Chemotherapy Based Approach in Nasopharyngeal Carcinoma: A Sixteen Year Report from a Teaching Hospital in India

Introduction: Nasopharyngeal carcinoma (NPC) is a rare malignancy in India except in north-eastern states. We present our institutional experience of 16 years highlighting management, outcomes, responses and toxicities. Material(s) and Method(s): NPC…

Tags: 2023, 2023 SE5 - Low Resource Setting, adjuvant therapy, Adolescent, Adult, Aged, albumin/ec [Endogenous Compound], Anemia, antiemetic agent, Article, Bahadur S, Bhasker S, Biswas A, bone metastasis, Cancer Investigation, Cancer Recurrence, Cancer Staging, capecitabine/dt [Drug Therapy], carboplatin/cb [Drug Combination], carboplatin/dt [Drug Therapy], cervical lymph node, chemoradiotherapy, Child, cisplatin/ae [Adverse Drug Reaction], cisplatin/cb [Drug Combination], cisplatin/dt [Drug Therapy], cisplatin/to [Drug Toxicity], cobalt therapy, Cohort Analysis, cranial nerve paralysis, cyclophosphamide/cb [Drug Combination], cyclophosphamide/dt [Drug Therapy], date of death, Diarrhea, diplopia, distant metastasis, docetaxel/cb [Drug Combination], docetaxel/dt [Drug Therapy], dysphasia, epirubicin/cb [Drug Combination], epirubicin/dt [Drug Therapy], exophthalmos, febrile neutropenia, Female, fluorouracil/cb [Drug Combination], fluorouracil/dt [Drug Therapy], Follow Up, gemcitabine/dt [Drug Therapy], Gogi R, Headache, hearing impairment, Histopathology, Hospitalization, Human, hypothyroidism, India, induction chemotherapy, Intensity Modulated Radiation Therapy, Kumar R, liver metastasis, lung metastasis, Major Clinical Study, Male, Mohanti BK, mucosa inflammation, multiple cycle treatment, nasopharynx carcinoma/dt [Drug Therapy], nasopharynx carcinoma/rt [Radiotherapy], nasopharynx carcinoma/su [Surgery], neck dissection, neck swelling, Neutropenia, nose obstruction, overall response rate, Overall Survival, paclitaxel/cb [Drug Combination], paclitaxel/dt [Drug Therapy], palliative chemotherapy, peripheral neuropathy, Pramanik R, primary tumor/rt [Radiotherapy], progression free survival, Radiotherapy Dosage, Retrospective Study, Salvage Therapy, Sharma A, Sikka K, Singh AC, Smoking, Spinal cord, survival prediction, teaching hospital, Thakar A, thrombocytopenia, Thulkar S, toxicity/si [Side Effect], treatment interruption, Treatment Outcome, trismus, Vomiting, xerostomia

Browse Items (345 total)