Browse Items · Pediatric Palliative Care Library

[comparison Of Palliative Care Representations Between Pediatrician Residents And Oncologist Residents: A Qualitative Study].

BACKGROUND:
Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and oncology…

Tags: 2016, Alexandre M, Archives de Pediatrie, Brouard J, Knowledge, Leneveu MC, May 2016 List, Pediatrics, Toulouse J

Comparison Of Palliative Care Representations Between Pediatrician Residents And Oncologist Residents: A Qualitative Study

BACKGROUND:
Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and oncology…

Tags: 2016, Alexandre M, Archives de Pediatrie, Brouard J, June 2016 List, Knowledge, Leneveu MC, Pediatrics, Toulouse J

Lethal Fetal Abnormalities: How To Approach Perinatal Palliative Care?

OBJECTIVE:
Some of the antenatally diagnosed fetal pathologies are unlikely to get compatible with life. Still some women choose to continue with pregnancy. Subsequently, perinatal palliative care (PPC) has become a constructive demarche in such…

Tags: 2016, Anomalies, Einaudi MA, Ethical Issue, Fetal Abnormality, Gire C, Haddad G, Information, Journal of Maternal, Fetal and Neonatal Medicine, Malformations, May 2016 List, Obstetrics & Gynecology, Palliative Care, Perinatal Medicine, Pregnancy, Prenatal-diagnosis, Professionals, Tosello B

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

Development, behavior, and biomarker characterization of Smith-Lemli-Opitz syndrome: An update

Background: Smith-Lemli-Opitz syndrome (SLOS) is an autosomal recessive inborn error of cholesterol metabolism syndrome with neurocognitive manifestations. SLOS is the result of mutations in the gene encoding the 7-dehydrocholesterol reductase, which…

Tags: 2016, 7 dehydrocholesterol/ec [Endogenous Compound], 8 dehydrocholesterol/ec [Endogenous Compound], adaptive behavior, Adolescent, Adult, Aggression, Albert P, Article, Autism, automutilation, Behavior, Bianconi S, Bukelis I, Case Study, cerebrospinal fluid level, characteristics, Child, Child Rearing, childhood, cholesterol/ec [Endogenous Compound], Clinical Article, Cognition, delayed development, development, Developmental delay, Farmer C, Female, Human, Intelligence Quotient, Interpersonal Communication, Joseph L, Journal of Neurodevelopmental Disorders, Lanham D, Male, Observational Study, Parent, Porter F D, Preschool Child, Priority Journal, problem behavior, Sarphare G, Smith Lemli Opitz syndrome, Smith-Lemli-Opitz syndrome, Socialization, Stanford-Binet Intelligence Scale, Sterols, Swedo S, Thurm A, Tierney E, tone and motor problems, Trajectory, Unclassified Drug, Walking, Wassif C A, Wheeler C, Young Adult

Feasibility And Acceptability Of A Reiki Therapy Intervention For Children Receiving Palliative Care

Background: Children are receptive to complementary therapies such as music, massage, and distraction for symptom management. Reiki therapy is ideal for children; particularly those receiving palliative care because it is a gentle, light touch…

Tags: 2016, Cohen Susan M, Danford CA, December 2016 List, Dianxu Ren, Journal of Pain and Symptom Management, Maurer SH, Thrane SE

Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project

BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…

Tags: 2016, Ashby M, February 2017 List, Meyer M, Pediatrics, Porter K, Tate M, Thienprayoon R

Risk Stratification For Opioid Misuse In Children, Adolescents, And Young Adults: A Quality Improvement Project

BACKGROUND:
The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system…

Tags: 2016, Ashby M, Children & Youth, December 2016 List, Drug Use, Meyer M, Narcotics, Pediatrics, Porter K, Tate M, Teenagers, Thienprayoon R, Young Adult

Perceptions Of The Pediatric Hospice Experience Among English- And Spanish-speaking Families

OBJECTIVE:
Many children who die are eligible for hospice enrollment but little is known about parental perceptions of the hospice experience, the benefits, and disappointments. The objective of this study was to explore parental perspectives of the…

Exhaust All Measures: Ethical Issues In Pediatric End-of-life Care

The death of a child may have a profound impact on parents, family members, and health care providers who provided care for the child. Unique challenges are faced by parents of seriously ill children as they must serve as the legal authority for…

Neonatal Palliative Care: A Quality Improvement Project

Our Neonatal Intensive Care Unit (NICU) Bereavement Team, are adapting strategies from the RCPCH Situational Awareness For Everyone (SAFE) Programme, to develop a quality improvement program for neonates with palliative care needs.

Aims

Identify…

Tags: 2016, Archives of Disease in Childhood, K Flood, S Jones, September 2016 List, TA Warlow

Examining factors associated with self-management skills in teenage survivors of cancer

BACKGROUND: Monitoring long-term health of teenage cancer survivors is dependent on successful transition from pediatric to adult long-term follow-up (LTFU) care. This study identified factors associated with self-management skills (SMSs), an…

Tags: 2016, Backlog, Barr R, Childhood Cancer Survivor, D'Agostino NM, Journal Article, Journal Of Cancer Survivorship: Research And Practice, Klassen AF, Nathan PC, Rosenberg-Yunger Zahava RS, Self-management skills, Syed IA, Transition

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, Cynthia, December 2016 List, Emily, Fults, Gerhardt, Marci, Markita, Shultz, Suttle

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, Cynthia, December 2016 List, Emily, Fults, Gerhardt, Marci, Markita, Shultz, Suttle

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

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

Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study

How Many Children And Young People With Life-limiting Conditions Are Clinically Unstable? A National Data Linkage Study

Objective To determine the clinical stage (stable, unstable, deteriorating or dying) for children and young people (CYP) aged 0–25 years in Scotland with life-limiting conditions (LLCs).

Design National cohort of CYP with LLCs using linked routinely…

Siblings of Children With a Complex Chronic Health Condition: Maternal Posttraumatic Growth as a Predictor of Changes in Child Behavior Problems

OBJECTIVE: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58…

Tags: 2016, Andrews GS, Backlog, Cadell S, DeLongis A, Journal Article, Journal of Pediatric Psychology, Siden H, Steele R, Stephenson E

Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems.

OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings…

Tags: 2016, Andrews GS, Cadell S, Charting the territory, Child Behavior Problems, Complex Chronic Conditions, DeLongis A, Families, Journal of Pediatric Psychology, June 2016 List, Pediatric Palliative Care, Posttraumatic Growth, Siblings., Siden H, Steele R, Stephenson E

Living With Dying In The Pediatric Intensive Care Unit: A Nursing Perspective

BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric…

The Family Communication Study: A Randomized Trial Of Prospective Pediatric Palliative Care Consultation, Study Methodology And Perceptions Of Participation Burden.

BACKGROUND:
To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the…

Tags: 2016, Aisenberg E, Bourget E, Contemporary Clinical Trials, Curtis JR, Doorenbos A, Family/caregivers Psychology, Hays R, Intensive Care Unit, June 2016 List, Lindhorst T, Oman N, Pediatrics, Psychological Adaptation, Randomized Trial, Rue T, Starks H, Stress Disorders

Specialized Rehabilitation Programs For Children And Adolescents With Severe Disabling Chronic Pain: Indications, Treatment And Outcomes

Children and adolescents with highly disabling chronic pain of high intensity and frequency are admitted to specialized pain rehabilitation programs. Some barriers to obtaining this specialized care include a lack of availability of treatment…

Tags: 2016, Children (Basel), Chronic Pain, Effectiveness, Indication, January 2017 List, Pediatric, Rehabilitation Programs, Specialized Pain Treatment, Stahlschmidt L, Wager J, Zernikow B

“the Nice Thing About Doctors Is That You Can Sometimes Get A Day Off School”: An Action Research Study To Bring Lived Experiences From Children, Parents And Hospice Staff Into Medical Students’ Preparation For Practice.

Abstract
Patient and public involvement in healthcare is important to ensure services meet their needs and priorities. Increasingly, patient experiences are being used to educate healthcare professionals. The potential contribution to medical…

Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution

BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE:…

Tags: 2016, Backlog, Baker JN, Duffy B, Gibson DV, Journal Article, Journal of Palliative Medicine, Levine DR, Snaman JM, Torres C

Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys

BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…

Tags: 2016, Backlog, Baker JN, Bereaved Parent, Bereavement, Bereavement Program, Cancer, Communication, End Of Life, Gibson DV, Grief, Health Care Provider, Journal Article, Kaye EC, Palliative Care, Pediatric Oncology, Snaman JM, Torres C

Parental Grief Following the Death of a Child from Cancer: The Ongoing Odyssey

BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models…

Tags: 2016, Backlog, Baker JN, Bereavement, Cancer, Continuity Of Patient Care, Counseling, Gibson D, Grief, Journal Article, Kaye EC, Pediatric Blood & Cancer, Qualitative Research, Self-Help Groups, Snaman JM, Torres C

Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program

Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive…

Tags: 2016, Avery W, Baker JN, Bereavement, Clark L, Cochran B, Grief, Hospice Care, Journal of Pain and Symptom Management, Kaye EC, Levine DR, March 2016 List, Noyes N, Palliative Care, Pediatrics, Snaman JM, Sparrow CK, Wilcox R

Helping Parents Live With The Hole In Their Heart: The Role Of Health Care Providers And Institutions In The Bereaved Parents’ Grief Journeys.

BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…

Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.

BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees…

Adolescents And Young Adults (aya) At The End Of Life: Using Voicing My Choices To Enhance Communication And Guide Planning

Purpose

Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close…

Tags: 2016, Claudia Begino, June 2016 List, Karen Fasciano, Kathleen Adlard, Leonard Sender, Lori Wiener, Maryland Pao, Phoebe Souza, Psycho-Oncology, Sima Zadeh

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

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

P259 A Scoping Review to Examine Symptoms in Children with Rare, Progressive, Life-Threatening Disorders

2016-12

Tags: 2016, Backlog, Beck C, Brown H, Dewan T, Grégoire MC, Harvey B, Hermansen AM, Journal Article, Journal of Pain and Symptom Management, Pawliuk C, Q3 Scoping Review, Siden H, Steele R, Widger K

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

Shifting Focus In Pediatric Advance Care Planning: From Advance Directives To Family Engagement

The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP…

Tags: 2016, Chavoshi N, Journal of Pain and Symptom Management, July 2016 List, Siden H

Physician stress in the context of medical aid in dying

2016-09

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

“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 often even effective treatments, is not available.
Nevertheless, the…

Tags: 2016, December 2016 List, Journal of Pain and Symptom Management, Lillian Rallison, Nancy Moules, Shelagh McConnell, Shelley Raffin Bouchal

Parental Involvement In Neonatal Critical Care Decision-making.

The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care…

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…

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