Browse Items · Pediatric Palliative Care Library

End-of-life Practices Among Tertiary Care Picus In The United States: A Multicenter Study

OBJECTIVE: To describe variability in end-of-life practices among tertiary care PICUs in the United States. DESIGN: Secondary analysis of data prospectively collected from a random sample of patients (n = 10,078) admitted to PICUs affiliated with the…

Promoting An Ethic Of Engagement In Pediatric Palliative Care Research

BACKGROUND: This paper defends the ethical and empirical significance of direct engagement with terminally ill children and adolescents in PPC research on health-related quality of life. Clinical trials and other forms of health research have…

Tags: 2015, Bartlett G, BMC Palliative Care, Crimi L, Ells C, Humans, Jabado N, July 2017 List, Longo C, Macdonald ME, Palliative Care/methods, Patient Participation/methods, Pediatric Nursing/methods, Quality Of Life, Rahimzadeh V, Research

Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical…

What Information Do Parents Need When Facing End-of-life Decisions For Their Child? A Meta-synthesis Of Parental Feedback

BACKGROUND: The information needs of parents facing end-of-life decisions for their child are complex due to the wide-ranging dimensions within which such significant events unfold. While parents acknowledge that healthcare professionals are their…

Tags: 2015, BMC Palliative Care, Communication, Decision Making, Health Knowledge Attitudes Practice, Hope, Humans, Intensive Care Units Pediatric/organization & Administration, July 2017 List, Needs Assessment, Parents/education, Parents/psychology, Sullivan J, Terminal Care/methods, Terminal Care/psychology, Time Factors, Wilkinson D, Xafis V

Meaning and coping orientation of bereaved parents: Individual and dyadic processes

The present study aimed to examine whether bereaved parents “meaning-made”–defined as results of attempts to reduce discrepancies between the meaning assigned to the death of the child and self and world-views—was influenced by their own and their…

Tags: 2017, Adaptation Psychological, Albuquerque S, August 2017 List, Bereavement, Buyukcan-Tetik A, Child, Female, Finkenauer C, Humans, Male, Narciso I, Parents/ Psychology, Pereira M, PLoS One, Schut HAW, Stroebe MS

Exploring perinatal death with midwifery students' using a collaborative art project

OBJECTIVE: To explore the influence of the Amulet artwork and exhibition on midwifery students' perceptions of caring for parents experiencing perinatal death. DESIGN: A descriptive qualitative design involving face-to-face semi-structured interviews…

Prioritisation of future research topics in paediatric palliative care in Ireland: a Delphi study

This paper reports the findings from a Delphi Study undertaken to identify the research priorities in children's palliative care in Ireland. Palliative care for children is a small and highly specialised field of healthcare that focuses on improving…

Consistency in end of life care

Draft guidelines address regional variations, but there are worries over terminology, the needs of family members and implementation. The death of a child is a comparatively rare event in the UK. Even so, more than 3,000 infant and 2,000 children and…

Tags: 2016, Adolescent, Allen D, August 2017 List, Child, Child Preschool, Communication, Decision Making, Hospice And Palliative Care Nursing/ Standards, Humans, Infant, Nurse-patient Relations, Nursing Children and Young People, Patient Participation, Pediatric Nursing/ Standards, Practice Guidelines As Topic

Seeking the best training model for difficult conversations in neonatology

OBJECTIVES: We hypothesize that a formal simulation curriculum prepares neonatology fellows for difficult conversations better than traditional didactics. METHODS: Single-center neonatology fellowship graduates from 1999 to 2013 were sent a…

Palliative Care in Obstetrics and Gynecology

Palliative care is specialized care for people with life-limiting illness; it focuses on symptom management and quality of life and ensures that a patient's care is concordant with her goals and values. Unlike end-of-life care, palliative care can be…

Tags: 2016, Advance Care Planning, August 2017 List, Communication, Female, Genital Neoplasms Female/complications/psychology/ Therapy, Humans, Infant Newborn, Journal Of Obstetrics And Gynecology, Lefkowits C, Life Expectancy, Mood Disorders/etiology/therapy, Nausea/therapy, Pain Management, Pain/etiology, Palliative, Perinatal Care, Solomon C

The AAP Resilience in the Face of Grief and Loss Curriculum

A career in pediatrics can bring great joy and satisfaction. It can also be challenging and lead some providers to manifest burnout and depression. A curriculum designed to help pediatric health providers acquire resilience and adaptive skills may be…

How holistic nursing can enhance the quality of life of children with cystic fibrosis

Cystic fibrosis (CF) is one of the most common life-limiting genetic conditions. Ellen Bolton (not her real name) is a teenager with one of the rarer presentations of CF. This case study explores the experiences of Ellen and her family. It discusses…

Tags: 2016, Adolescent, August 2017 List, Child Health, Cystic Fibrosis, Cystic Fibrosis/ Nursing/psychology, Family/psychology, Female, Holistic Nursing/ Methods, Humans, Hunt J, life-limiting illness, Nursing Children and Young People, Paediatrics, Quality Of Life, Respiratory System, Siblings/psychology, Tointon K, Well-being

Children with life-shortening conditions are denied the support they need, says charity

Children who require palliative care are being 'short changed or ignored', according to a survey of services in England by the charity Together for Short Lives.

Tags: [No authors listed], 2016, Adolescent, August 2017 List, Charities, Child, Child Preschool, England, Healthcare Financing, Hospice And Palliative Care Nursing, Humans, Infant, Infant Newborn, Nursing Children and Young People, Palliative Care, Respite Care, State Medicine, Young Adult

Psychosocial Health Outcomes for Family Caregivers Following the First Year of Bereavement

The authors examined psychosocial outcomes following the first year of bereavement, for 51 family caregivers, including both spouses and offspring. Researchers assessed caregivers during palliative care and again during the second year of…

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

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…

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…

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…

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

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…

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…

Children with Down syndrome: Clinical course and mortality-associated factors in a French medical paediatric intensive care unit

AIM: To investigate clinical course and mortality-associated factors in children with Down syndrome (DS) managed in a medical paediatric intensive care unit. METHODS: A single-centre, retrospective study conducted between 2001 and 2010 in DS children…

When Technology Fails: Community-Based Pediatric Hospice

The United Kingdom Sets Limits on Experimental Treatments: The Case of Charlie Gard

Hope and despair

Tags: 2016, Child Preschool, December 2017 List, Hope, Humans, Infant, Isaacs D, Journal Of Paediatrics & Child Health, Stress Psychological, Terminal Care

Trisomy 18: A survey of opinions, attitudes, and practices of neonatologists

We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…

Tags: 2016, Adult, American Journal of Medical Genetics Part A, Article, Attitude Of Health Personnel, Attitude To Abortion, Biggio JR, Caucasian, Christian, Chromosomes Human Pair 18, Clinical Practice, Correlation Analysis, December 2017 List, Demography, Disease Management, Disease Severity, Edwards RK, Family, Female, Fetus Malformation, Health Care Surveys, Human, Humans, Intellectual Impairment, Jacobs AP, Male, Marriage, Medical Decision Making, Medical Society, Neonatologist, Neonatologists/px [psychology], Newborn Care, Normal Human, Outcome Assessment (health Care), Palliative Care, Palliative Therapy, Parental Attitude, Philips JB 3rd, Physician Attitude, Practice Patterns Physicians', Prenatal Diagnosis, Priority Journal, Race Difference, Resuscitation, Robin NH, Subramaniam A, Survival Rate, Tang Y, Trisomy 18, Trisomy/di [diagnosis], United States

Advance care planning in adolescents with cystic fibrosis: A quality improvement project

INTRODUCTION: Advance care planning (ACP), though recommended, has not been studied in adolescents with cystic fibrosis (CF). This quality improvement project engaged adolescents with advanced CF disease in ACP and assessed patient and CF provider…

Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study

PURPOSE: At some point in life, most people become caregivers to a terminally ill relative. Previous studies have shown that many caregivers experience psychological distress and declining physical health, but these studies have predominantly been…

Paediatric ethics: a repudiation of the Groningen protocol

Tags: 2008, December 2017 List, Decision Making, Ethics Clinical, Euthanasia/es [ethics], Humans, Infant Newborn, Infanticide/es [ethics], Kodish E, Lancet, Netherlands, Withholding Treatment/es [ethics]

The use of drugs with a life-shortening effect in end-of-life care in neonates and infants

OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect. DESIGN: For 292/298 deaths of live born infants (

Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy

Duchenne muscular dystrophy (DMD) is a progressive, impairing, life-limiting disorder of childhood. Little is known about how siblings adapt to this. The aim of this study is to document psychosocial adjustment in siblings of patients with DMD.…

Tags: 2010, Adaptation Psychological, Adolescent, Child, December 2017 List, European Journal of Paediatric Neurology, Female, Garralda ME, Humans, Kinali M, Male, Mental Health, Muntoni F, Muscular Dystrophy Duchenne/px [psychology], Psychiatric Status Rating Scales, Psychology, Read J, Siblings/px [psychology], Surveys And Questionnaires

Forgoing life support: how the decision is made in European pediatric intensive care units

PURPOSE: To determine how decisions to forgo life support are made in European pediatric intensive care units (PICUs). METHODS: A multicenter, prospective study, the Eurydice II study, among 45 PICUs: 20 in France, 21 in Northern/Western (N/W)…

Tags: 2011, Child Preschool, December 2017 List, Decision Making, Devictor DJ, Europe, Female, France, Health Care Surveys, Humans, Intensive Care Medicine, Intensive Care Units Pediatric, Latour JM, Life Support Care, Male, Prospective Studies, Surveys And Questionnaires, Terminal Care/td [trends], Withholding Treatment/sn [statistics & Numerical Data]

Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.

Tags: 2016, Biomedical Research, Cadell S, Charting the territory, Female, Humans, Male, Palliative Care, Palliative Medicine, Parents/psychology, Patient Selection, Research Design/standards, Siden H, Steele R

Using colors to assess pain in toddlers: validation of "the rainbow pain scale"-a proof-of-principle study.

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

An integrative approach to music therapy in pediatric palliative care.

Tags: 2014, Adolescent, British Columbia, Child, Child Preschool, Clark BA, Female, Hospices, Humans, Infant, Journal Of Palliative Care, Male, Music Therapy, Palliative Care, Program Development, Program Evaluation, Siden H, Straatman L, Young Adult

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