Browse Items · Pediatric Palliative Care Library

When Technology Fails: Community-Based Pediatric Hospice

Tags: 2016, Biomedical Technology, Butler S, Child, Child Health Services/og [organization & Administration], Child Preschool, Female, Haas K, Health Care Reform, Hospice And Palliative Care Nursing/og [organization & Administration], Hospice Care/og [organization & Administration], Hospices/og [organization & Administration], Humans, Journal of Pediatric Nursing, Kramer N, Male, November 2017 List, Pediatrics, Quality Assurance Health Care, Residence Characteristics, Risk Assessment, Ryan JG, United States, Vizzachero N, Waechtler E

Truth telling in the setting of cultural differences and incurable pediatric illness: A review

Importance Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to…

Tags: 2017, Diekema D, Feudtner C, JAMA Pediatrics, November 2017 List, Rosenberg AR, Starks H, Unguru Y

Trends in Pediatric Palliative Care 2017; Issue #11

This commentary brings together perspectives from an interdisciplinary group of researchers –five trainees, a research manager, and a senior scientist –who share an interest in the emergent field of childhood ethics and pediatric palliative…

Tags: Macdonald ME, November 2017 List

Transitional Objects to Faciliate Grieving Following Perinatal Loss

BACKGROUND: Parents who experience a perinatal loss often leave the hospital with empty arms and no tangible mementos to validate the parenting experience. Opportunities to create parenting experiences with transitional objects exist following the…

Tags: 2017, Advances in Neonatal Care, Blake SM, Bradshaw WT, LeDuff LD 3rd, November 2017 List

The role of hospice in the transition from hospital to home for technology‐dependent children—a qualitative study

Aims and objectives To report parent and professional perspectives of step‐down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years,…

Tags: 2017, Brazil Kevin, Children, Discharge Planning, Hospital, Journal of Clinical Nursing, McCloskey Sharon, November 2017 List, Price Jayne, Technology

The Impact of Mortality on Total Costs Within the ICU

OBJECTIVES: The high cost of critical care has engendered research into identifying influential factors. However, existing studies have not considered patient vital status at ICU discharge. This study sought to determine the effect of mortality upon…

Symptom management and psychological support for families are the cornerstones of end-of-life care for children with spinal muscular atrophy type 1

AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17…

Tags: 2017, Acta Paediatrica, Agosto C, Benini F, Dyspnoea, End Of Life, Gregorio A, November 2017 List, paediatric palliative care, Pain Relief, Pede CD, Spinal Muscular Atrophy Type 1, Tommasi V

Strange Bedfellows No More: How Integrated Stem-Cell Transplantation and Palliative Care Programs Can Together Improve End-of-Life Care

In the intense, cure-oriented setting of hematopoietic stem-cell transplantation (HSCT), delivery of high-quality palliative and end-of-life care is a unique challenge. Although HSCT affords patients a chance for cure, it carries a significant risk…

Tags: 2017, Baker Justin N, Journal of Oncology Practice, Lehmann Leslie E, Levine Deena R, November 2017 List, Ullrich Christina, Wolfe Joanne

Repeal of the affordable care act will negatively impact children at end of life

Tags: 2017, Child, Child Health Care, Health Care Cost, Health Care Policy, Hospice Care, Human, Keim-Malpass J, Lindley LC, Medicaid, November 2017 List, Pediatrics, Priority Journal, Quality Of Life, Review, United States

Reframing US Maternity Care: Lessons Learned From End-of-Life Care

Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital

INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and…

Tags: 2017, American Journal of Hospice and Palliative Medicine, Decision Making, end-of-life, Ethics, Kim MJ, Lee HD, Lee JH, Neonatal Care, Neonatal Intensive Care Unit, Newborns, November 2017 List

Providing holistic, specialist palliative care services to children - one paediatricians experience working in a children's hospice

The specialist provision of paediatric palliative care is a relatively new discipline. This article will review the epidemiology of paediatric palliative care and will discuss the current delivery of this care within the United Kingdom. The author…

Tags: 2017, Child, Hospice, Human, Hunter M, November 2017 List, Paediatrics And Child Health, Palliative Therapy, Pediatrician, United Kingdom

Provider-Prioritized Domains of Quality in Pediatric Home-Based Hospice and Palliative Care: A Study of the Ohio Pediatric Palliative Care and End-of-Life Network

BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be…

Tags: 2017, Domains, Grossoehme D, Home-based Hospice And Palliative Care, Journal of Palliative Medicine, Mark MSJ, November 2017 List, Pediatric Palliative Care, Quality, Thienprayoon R

Predicting grief intensity after recent perinatal loss

OBJECTIVE: The Perinatal Grief Intensity Scale (PGIS) was developed for clinical use to identify and predict intense grief and need for follow-up after perinatal loss. This study evaluates the validity of the PGIS via its ability to predict future…

Tags: 2017, Grisanti MM, Hall LA, Hayden J, Hill J, Hutti MH, Journal of Psychosomatic Research, Kloenne E, Miscarriage, Myers J, Neonatal Death, November 2017 List, Perinatal Grief Screening Instrument, Polivka BJ, Stillbirth, White S

Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is…

Tags: 2017, Johnston EE, Journal of Oncology Practice, Kamal AH, November 2017 List, Rosenberg AR

Pediatric Ethics and Communication Excellence (PEACE) Rounds: Decreasing Moral Distress and Patient Length of Stay in the PICU

This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We…

Pediatric Cardiomyopathies

Pediatric cardiomyopathies are rare diseases with an annual incidence of 1.1 to 1.5 per 100 000. Dilated and hypertrophic cardiomyopathies are the most common; restrictive, noncompaction, and mixed cardiomyopathies occur infrequently; and…

Patterns and Outcomes of Care in Children with Advanced Heart Disease Receiving Palliative Care Consultation

CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children…

Tags: 2017, Advanced Heart Disease, Al-Sayegh H, Balkin E M, Blume E D, Goals Of Care, Guslits E, Journal of Pain and Symptom Management, Ma C, Marcus KL, November 2017 List, Pediatric End-of-life Care, Pediatric Palliative Care, Wolfe J

Parents spend an average of nine hours a day providing palliative care for children at home and need to maintain an average of five life-saving devices

AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional…

Tags: 2017, Acta Paediatrica, Benini F, Brugnaro L, Carers, Home-based Care, Lazzarin P, Life-limiting Diseases, November 2017 List, paediatric palliative care, Parents, Schiavon B

Parent Perspectives of Neonatal Intensive Care at the End-of-Life

This descriptive qualitative study explored parent experiences related to their infant's neonatal intensive care unit (NICU) hospitalization, end-of-life care, and palliative care consultation. "Life and death in the NICU environment" emerged as the…

Palliative epilepsy surgery in Dravet syndrome-case series and review of the literature

PURPOSE: Dravet syndrome (DS), also known as severe myoclonic epilepsy of infancy (SMEI), is a rare genetic disorder that results in severe childhood-onset epilepsy. Children with DS initially present with seizures in the first year of life that are…

Palliative care for children with a yet undiagnosed syndrome

The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and…

Tags: 2017, Balzer Stefan, Borkhardt Arndt, European Journal of Pediatrics, Gagnon Gabriele, Hoell Jessica, Janßen Gisela, Kuhlen Michaela, November 2017 List, Oommen Prasad, Oommen Prasad T, Trocan Laura, Warfsmann Jens

Palliative Care

Cancer is a leading cause of death in adolescents and young adults (AYAs) Wiener et al. (Pediatr Blood Cancer 60(5):715-718, 2013). Though most AYAs will survive, cancer will become incurable in 10-40 % Schrijvers and Meijnder (Cancer Treat Rev…

Tags: 103-90-2 (paracetamol), 1095-90-5 (methadone), 125-56-4 (methadone), 12794-10-4 (benzodiazepine), 137-58-6 (lidocaine), 2017, 23142-53-2 (methadone), 24847-67-4 (lidocaine), 297-88-1 (methadone), 437-38-7 (fentanyl), 53663-61-9 (opiate), 56934-02-2 (lidocaine), 60142-96-3 (gabapentin), 73-78-9 (lidocaine), 76-99-3 (methadone), 8002-76-4 (opiate), 8008-60-4 (opiate), Acute Stress Disorder, Alcohol Consumption, Anticonvulsive Agent, Appetite, Benzodiazepine, Brill P, Connelly E, Corticosteroid, Distress Syndrome, Dyspnea, Fentanyl, Gabapentin, Hair Loss, Health Care Personnel, Health Care System, Hospital, Howk T, Human, Intensive Care Unit, Lidocaine, Major Depression, Medical Staff, Methadone, Mortality, Nausea And Vomiting, Neoplasm, November 2017 List, Obesity, Opiate, Palliative Therapy, Paracetamol, Paralysis, Patient Care Planning, Pediatric Oncology, Pillai R, Postovsky S, Priority Journal, Prostaglandin/ec [endogenous Compound], Quality Of Life, Tracheostomy, Wasilewski-Masker K, Wrammert KC

Pain Management Concerns From the Hospice Family Caregivers' Perspective

BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES:…

Tags: 2017, American Journal of Hospice and Palliative Medicine, Carers, Chi NC, Demiris G, End-of-life Care, Family Caregivers, Hospice Care, November 2017 List, Oliver DP, Pain Management, Pain Medications, Pike KC, Washington K

Pain Assessment and Treatment in Children With Significant Impairment of the Central Nervous System

Pain is a frequent and significant problem for children with impairment of the central nervous system, with the highest frequency and severity occurring in children with the greatest impairment. Despite the significance of the problem, this…

Tags: 2017, Analgesics/ Therapeutic Use, Autistic Disorder/ Complications, Benzodiazepines/therapeutic Use, Cerebral Palsy/ Complications, Child, Conflicts Of Interest To Disclose., Drug Therapy Combination, Hauer J, Houtrow AJ, Humans, Intellectual Disability/ Complications, November 2017 List, Pain Management/ Methods, Pain Measurement/ Methods, Pain/complications/diagnosis/ Drug Therapy, Pediatrics

Paediatric traumatic brain injury: prognostic insights and outlooks

PURPOSE OF REVIEW: Traumatic brain injury (TBI) is a leading cause of death and disability in children. Prognostication of outcome following TBI is challenging in this population and likely requires complex, multimodal models to achieve clinically…

Tags: 2017, Au AK, Clark RSB, Current Opinion in Neurology, November 2017 List

Navigating Decisional Discord: The Pediatrician's Role When Child and Parents Disagree

From the time when children enter the preteen years onward, pediatric medical decision-making can entail a complex interaction between child, parents, and pediatrician. When the child and parents disagree regarding medical decisions, the pediatrician…

Mucopolysaccharidosis type I, II and VI and response to enzyme replacement therapy: Results from a single-center case series study

Mucopolysaccharidoses (MPS) types I, II and VI are associated with deficiencies in alpha-L-iduronidase, iduronate-2-sulfatase and N-acetylgalactosamine-4-sulfatase, respectively, and generally involve progressive and multi-systemic clinical…

Tags: 2017, Agarwal A, Albano LMJ, El Dib R, Franco Jfds, Glycosaminoglycans, Intractable Rare Dis Res, Kim CA, Lysosomal Storage Disorders, Milhan NVM, November 2017 List, Prognosis, Soares D, Treatment

Mortality, length of stay, bloodstream and respiratory viral infections in a pediatric intensive care unit

OBJECTIVES: We investigated whether diagnostic categories and presence of infections were associated with increased mortality or length of stay (LOS) in patients admitted to a pediatric intensive care unit (PICU). METHODS: A retrospective study of…

Morbidity: Changing the Outcome Paradigm for Pediatric Critical Care

The focus of critical care has evolved from saving lives to preservation of function. Morbidity rates in pediatric critical care are approximately double mortality rates. Morbidity includes complications of disease and medical care. In pediatric…

Tags: 2017, Critical Care, Functional Status, Heneghan JA, Morbidity, November 2017 List, Outcomes, Outcomes Research, Pediatric Clinics of North America, Pediatric Critical Care, Pediatric Intensive Care, Pollack M, Quality

Methods to Assess Adverse Childhood Experiences of Children and Families: Toward Approaches to Promote Child Well-being in Policy and Practice

BACKGROUND: Advances in human development sciences point to tremendous possibilities to promote healthy child development and well-being across life by proactively supporting safe, stable and nurturing family relationships (SSNRs), teaching…

Tags: 2017, Academic Pediatrics, Adverse Childhood Experiences, Bethell CD, Braveman P, Carle A, Child Health, Gombojav N, Hudziak J, Measurement, November 2017 List, Powers K, Resilience, Wade R

Late Effects of Treatment and Palliative Care

Identifying late effects of treatment and integrating palliative care when appropriate are increasingly recognized as important elements of childhood tumor management. Patients with CNS tumors are at a high risk for mortality, and survivors have high…

Tags: 147-94-4 (cytarabine), 154-93-8 (carmustine), 15475-56-6 (methotrexate), 15663-27-1 (cisplatin), 2017, 26035-31-4 (cisplatin), 59-05-2 (methotrexate), 69-74-9 (cytarabine), 7413-34-5 (methotrexate), 96081-74-2 (cisplatin), Advance Care Planning, Appetite Disorder, Banerjee A, Bone Density, Brain Tumor, Carmustine, Central Nervous System Tumor, Chang E, Childhood Cancer Survivor, Cisplatin, Constipation, Corticosteroid, Cytarabine, Diarrhea, Dyspnea, Endocrine Disease, Fatigue, Genetic Polymorphism, Goldsby R, Health Care Quality, Human, Incidence, Medical Decision Making, Medulloblastoma, Methotrexate, Morbidity, Mortality Rate, Mueller S, Nausea And Vomiting, Neuroectoderm Tumor, Neuropathic Pain, Neuropsychological Test, November 2017 List, Pain Assessment, Palliative Therapy, Patient Care, Pediatric Oncology, Phase 1 Clinical Trial (topic), Priority Journal, Psychosocial Disorder, Quality Of Life, Questionnaire, Radiation Injury, Respiration Depression, Seizure, Signal Transduction, Spasticity

Integration of hypnosis into pediatric palliative care

At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC.…

Tags: 2017, Annals Of Palliative Medicine, Child, Friedrichsdorf SJ, Hypnosis, Hypnotherapy, Integrative Medicine, Kohen DP, November 2017 List, Pediatric Palliative Care (ppc)

Guidance on forgoing life-sustaining medical treatment

Pediatric health care is practiced with the goal of promoting the best interests of the child. Treatment generally is rendered under a presumption in favor of sustaining life. However, in some circumstances, the balance of benefits and burdens to the…

Tags: 2017, Apparent Life Threatening Event/th [therapy], Article, Awareness, Boss RD, Caregiver, Carter BS, Child Abuse, Child Care, Christian CW, Clinical Decision Making, Comatose Patient, Consensus, Consultation, Critical Illness/th [therapy], Davies D, Death, Death By Neurologic Criteria, Dell ML, Developmental Disorder/th [therapy], Diekema DS, Disease Burden, Disease Course, Elster N, Ethical Decision Making, Extremely Low Gestational Age, Family Decision Making, Family Stress, Feudtner C, Flaherty EG, Fortson BL, Foster Care, Gavril AR, Gestational Age, Goal Attainment, Guinn-Jones M, Hauer JM, Health Belief, High Risk Population, Human, Humphrey LM, Hurley TP, Hydration, Idzerda SM, Imaizumi S, Imminent Death, Informed Consent, Intensive Care, Interpersonal Communication, Katz AL, Klick J, Klipstein S, Laskey A, Laventhal N, Legal Aspect, Legano LA, Leventhal JM, Life-sustaining Medical Treatment, Linebarger JS, Lord B, MacAuley RC, MacMillan H, Medical Ethics, Medical Expert, Medical Information, Medical Procedures, Medical Specialist, Medically Administered Nutrition And Hydration, Moon MR, Neglect, Neurologic Disease/di [diagnosis], November 2017 List, Nutrition, Okun AL, Opel DJ, Oxygenation, Pain/th [therapy], Palliative Therapy, Parker S, Patient Care Planning, Pediatrician, Pediatrics, Practice Guideline, Priority Journal, Prognosis, Quality Of Life, Resuscitation, Rivera F, shared decision making, Social Support, Spiritual Care, Statter MB, Stedt E, Survival, Teamwork, Terminal Care, Tissue Perfusion, Uncertain Prognosis, Weise KL

Grief reactions of couples to perinatal loss: a one-year prospective follow-up

BACKGROUND: Perinatal losses are traumatic events in the lives of families and can have serious long-term consequences for the psychological health of parents and any subsequent children. DESIGN: A prospective follow-up study. METHODS: We recruited,…

Tags: 2017, Chen YP, Cheng HR, Cheng PT, Gee, Grief, Journal of Clinical Nursing, Marital Relationship, Miscarriage, November 2017 List, Parents, Perinatal Loss, Social Support, Stillbirth, Tseng YF, Yang SF

Ethics and palliative care in the perinatal world

The perinatal world is unique in its dutiful consideration of two patients along the lines of decision-making and clinical management - the fetus and the pregnant woman. The potentiality of the fetus-newborn is intertwined with the absolute…

Tags: 2017, Carter BS, Counseling, Ethics, Marty CM, Neonatal, November 2017 List, Palliative Care, Perinatal Decision-making, Seminars in Fetal and Neonatal Medicine

Effectively using communication to enhance the provision of pediatric palliative care in an acute care setting

The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use…

Tags: 2008, Ahsens L, Child, Emergency Care, Hubbard C, Hubble R, Human, Journal of Multidisciplinary Healthcare, November 2017 List, Palliative Therapy, Pediatrics, Trowbridge K, Ward-Smith P

Disparities in Pediatric Palliative Care: An Opportunity to Strive for Equity

Abbreviations:EOL — end of lifePPC — pediatric palliative careThe importance of pediatric palliative care (PPC) for children with cancer has been broadly embraced over the last 2 decades in response to compelling evidence of high symptom burden and…

Tags: 2017, Bona K, November 2017 List, Pediatrics, Wolfe J

Deaths and end-of-life decisions differed between neonatal and paediatric intensive care units at the same children's hospital

AIM: We compared neonatal deaths and end-of-life decisions in a neonatal intensive care unit (NICU) and paediatric intensive care unit (PICU) in a Dutch tertiary children's hospital. SUBJECTS: All 235 full-term infants who died within 28 days of life…

Tags: 2017, Acta Paediatrica, End-of-life Decisions, Ethics, Groenendaal F, Jansen NJG, Mortality, Neonatal Intensive Care Unit, November 2017 List, Paediatric Intensive Care Unit, Snoep MC

Critical Care Resource Utilization and Outcomes of Children With Moderate Traumatic Brain Injury

OBJECTIVES: To characterize admission patterns, critical care resource utilization, and outcomes in moderate pediatric traumatic brain injury. DESIGN: Retrospective cohort study. SETTING: National Trauma Data Bank. PATIENTS: Children under 18 years…

Tags: 2017, Chaikittisilpa N, Chandee T, Krishnamoorthy V, Lele AV, Lyons VH, November 2017 List, Pediatric Critical Care Medicine, Vavilala MS, Watanitanon A

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