Browse Items · Pediatric Palliative Care Library

Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps

This article highlights key findings from the "Comprehensive Cancer Care for Children and Their Families" March 2015 joint workshop by the Institute of Medicine (IOM) and the American Cancer Society. This initiative convened more than 100 family…

A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses

PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the…

Tags: 2016, Adolescent, Adult, Akesson H, Attitude Of Health Personnel, Child, Child Of Impaired Parents/lj [legislation & Jurisprudence], European Journal Of Oncology Nursing, Glasdam S, Hospice And Palliative Care Nursing, Humans, Intention, Karidar H, Neoplasms/nu [nursing], Oncology 2017 List, Oncology Nursing, Parents, Professional-family Relations, Sweden

A Call for Psychosocial and Palliative Care Training Standards for Pediatric Hematology-Oncology Physicians, A Reply to: Communication, Documentation, and Training Standards in Pediatric Psychosocial Oncology

Letter to the editor

Tags: 2016, Child, Communication, Documentation, Force LM, Hematology/ed [education], Humans, Medical Oncology/ed [education], Oncology 2017 List, Palliative Care, Pediatric Blood and Cancer, Pediatrics/ed [education], Rosenberg AR

"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice

Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the…

Physician stress in the context of medical aid in dying

We have now completed a vigorous public and private debate regarding the right-to-die in Canada as Parliament has passed legislation (Bill C-14) following the Supreme Court decision in the Carter case.1 Quebec has already passed and implemented a…

Tags: 2016, Siden H, University of British Columbia Medical Journal

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

Pediatric palliative care in Canada in 2012: a cross-sectional descriptive study.

BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized…

Tags: 2016, Adam R, Amrita S, Claude C, Cmaj Open, Daoust L, Davies D, Gregoire Marie-Claude, Hodgson-Viden H, Laflamme J, Liben S, Robertson M, Siden H, Stenekes S, Vadeboncoeur C, Widger K

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…

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…

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

Hope and despair

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

"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

When Technology Fails: Community-Based Pediatric Hospice

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…

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…

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…

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

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

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…

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

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…

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

We need to attract more students to palliative care

A good palliative care service is responsive, available to families where they want it, provided round the clock, and co-ordinated by a lead healthcare professional or team. This is the view of one hospice director of care in response to a draft good…

Tags: 2016, August 2017 List, Choice, Health Services Accessibility, Hospice And Palliative Care Nursing, Humans Personnel Selection, Nursing Children and Young People, Students Nursing, Terminal Care/manpower, Walker C

Patterns Of Palliative Care Service Consultation In A Sample Of Critically Ill Icu Patients At High Risk Of Dying

OBJECTIVE: Describe patterns of palliative care service consultation among a sample of ICU patients at high risk of dying. BACKGROUND: Patients receiving mechanical ventilation (MV) face threats to comfort, social connectedness and dignity due to…

Tags: 2016, Barnato AE, Critical Care, End-of-life Care, Erlen JA, Happ MB, July 2017 List, Palliative Care, Patient-centered Outcomes, PLOS Neglected Tropical Diseases, Quality Of Health Care, Seaman JB, Sereika SM

Respite Services For Children With Life-limiting Conditions And Their Families In Ireland

Appropriate respite care for children with life-limiting conditions (LLC) and their families is the cornerstone of high quality paediatric care. The effect of caring for children with LLC on families, including parental needs, cannot be…

Tags: 2016, July 2017 List, Katie H, Nursing Children and Young People

'A Short Time but a Lovely Little Short Time': Bereaved Parents' Experiences of Having a Child with Spinal Muscular Atrophy Type 1

AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies…

Tags: 2016, Bereavement, Forbes R, Genetics, Higgs EJ, Journal of Paediatrics and Child Health, July 2017 List, McClaren BJ, Neuromuscular Disease, Qualitative Research, Ryan MM, Sahhar MAR, Spinal Muscular Atrophy

Predictors Of Care Gaps In Adolescents With Complex Chronic Condition Transitioning To Adulthood

CONTEXT: Breaks in the delivery of health care (ie, [health]care gaps) occur in a large proportion of young people transitioning to adulthood. Developing interventions that prevent adolescents from dropping out of the medical system, as they leave…

Tags: 2016, American Journal of Obstetrics & Gynecology, Bovijn L, Budts W, Gewillig M, Goossens E, July 2017 List, Moons P

Siblings Of Children With Life‐limiting Conditions: Psychological Adjustment And Sibling Relationships

Background This study explored psychological adjustment and sibling relationships of siblings of children with life‐limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these conditions.…

Tags: 2016, Behaviour Problems, Child: Care, Health and Development, Fullerton JM, Hain R, Hastings RP, Impact On Siblings, June 2017 List, Life-limiting, Quality Of Life, Totsika V

The Provision Of Family-centred Intensive Care Bereavement Support In Australia And New Zealand: Results Of A Cross Sectional Explorative Descriptive Survey

BACKGROUND: Caring for the bereaved is an intrinsic part of intensive care practice with family bereavement support an important aspect of the nursing role at end of life. However, reporting on provision of intensive care family bereavement support…

Tags: 2016, Aust Crit Care, Bereavement, Coombs M, Critical Care, Death, Family, Grief, Hospice Care, June 2017 List, Mitchell M, Wetzig K

Aspects Of Palliative Care In Child Neurology

Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or…

Family-oriented Palliative Care: Parents' Perspective And Experience

Palliative care is needed for children with neurodegenerative and progressive neuromuscular diseases, inborn genetic (e.g., chromosomal disorders, deletion syndromes) or metabolic disorders, as well as for children with early brain lesions which can…

End-of-life Decisions for Fragile Neonates: Navigating between Opinion and Evidence-based Medicine

The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous…

Tags: 2016, Archives of Disease in Childhood. Fetal and Neonatal Edition, Barrington K, Ethics, Farlow B, February 2017 List, Janvier A, Mortality, Neonatology, Palliative Care, Patient Perspective, Verhagen E

Relationship Between Response To Stress & Meaning Making And The Effects On Grief After Child Death

Learning Objectives: Parents that experience the death of a child are at high risk for complicated grief, which may be related to unsuccessful attempts to find meaning in their loss. Responses to stress include involuntary reactions that reflect…

Tags: 2016, Critical Care Medicine, February 2017 List, Fults M, General & Internal Medicine, Gerhardt C, Shultz E, Suttle M

Hospitalization Outcomes In Children With End Of-life Care Measures

Learning Objectives: Care at end of life in adults is known to account for a large proportion of health care resources. Current national estimates of outcomes in hospitalized children with end of life care are unknown. Using a large nationwide…

Tags: 2016, Allareddy V, Critical Care Medicine, February 2017 List, General & Internal Medicine, Lee MK, Nalliah R, Rampa S

The Relationship Between Bereaved Parental Knowledge Of Events And Satisfaction With Care

Learning Objectives: Parents have described high-quality end of life care as care that involves giving news with sensitivity, giving clear information on what to expect, and generally preparing families for the circumstances surrounding their child's…

Tags: 2016, Critical Care Medicine, February 2017 List, Fults M, Gerhardt C, Shultz E, Suttle M

Fifteen-minute Consultation: Perinatal Palliative Care

Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic…

Tags: 2016, Archives of Disease in Childhood, February 2017 List, Harrop E, Kelly B, Sidgwick P, Todorovic A, Wilkinson D

Multi-disciplinary Pediatric End-of-life Training Improves Staff Preparedness And Lessens Staff Distress

Background: Children's hospital professionals generally receive standardized training in Pediatric Advanced Life Support (PALS) but they are not regularly trained in the provision of end-of-life care in situations where death is anticipated. To…

Tags: 2016, Azim J, February 2017 List, Halsey M, Journal of Pain and Symptom Management, Keefer P, Pituch K

Tensions At The End Of Life In Pediatrics: Actors, Causes, Coping Strategies And Remedies

Background: The majority of children die in pediatric hospitals after a decision to withhold or withdraw life sustaining interventions. Tensions and conflicts at the end of life (EOL) are not rare in pediatric hospitals. Objective: To investigate how…

Tags: 2016, Archambault-Grenier MA, Duval M, February 2017 List, Humbert N, Janvier A, Journal of Pain and Symptom Management, Payot A, Roy-Gagnon MH, Stojanovic S

"Scared of Palliative ": Perspectives on Palliative Care from Pediatric Nurses Caring for Children with Progressive Life Shortening Illnesses on Acute Care Units

Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the…

Tags: 2016, February 2017 List, Journal of Pain and Symptom Management, McConnell S, Moules N, Raffin Bouchal S, Rallison L

A Survey Of Pediatric Critical Care Fellows On Palliative Care Principles Applied In The Icu Setting

Learning Objectives: Pediatric intensivists are often required to practice what has been described as "primary palliative care". This includes providing optimal symptom management, communication and family support for critically ill children with…

Tags: 2016, Critical Care Medicine, Dickerman M, February 2017 List, Jump J

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