Browse Items · Pediatric Palliative Care Library

National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care

Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…

National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care

Abstract Background: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. Objectives: We examined the impact of an enhanced implementation of the Education in Palliative and…

Tags: 2018, Bouffet E, Brennenstuhl S, Friedrichsdorf S, Greenberg M, Husain A, Journal of Palliative Medicine, Leyden M, Liben S, October 2018 List, Pole JD, Rapoport A, September 2018 List, Siden H, Whitlock JA, Widger K, Wolfe J

Protocol: Evaluating The Impact Of A Nation-wide Train-the-trainer Educational Initiative To Enhance The Quality Of Palliative Care For Children With Cancer

Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe…

Not There Yet: Pediatric Palliative Care In Canada 2002 – 2012

Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the…

Tags: 2016, Claude Cyr, Davies D, December 2016 List, Gregoire Marie-Claude, Heather Hodgson-Viden, Helene Roy, Journal of Pain and Symptom Management, Liben S, Lysanne Dauost, Rapoport A, Robertson M, Sarpal A, Siden H, Simone Stenekes, Vadeboncoeur C, Widger K

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

Location of death among children with life-threatening conditions: a national population-based observational study using the Canadian Vital Statistics Database (2008-2014)

BACKGROUND: Patterns in location of death among children with life-threatening conditions (e.g., cancer, genetic disorders, neurologic conditions) may reveal important inequities in access to hospital and community support services. We aimed to…

Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study

Background Children with life-threatening conditions frequently experience high intensity care at the end of life, though most of this research only focused on children with cancer. Some research suggests inequities in care provided based on age,…

Tags: 2023, Bmc Pediatrics, Brennenstuhl S, Child, Gupta S, Nelson KE, Only Child, Rapoport A, Seow H, September List 2059, Siden H, Tanuseputro P, Terminal Care, Vadeboncoeur C, Widger K

Enhancing the quality of palliative care for children with cancer: A nation-wide train-the-trainer educational initiative

It is now widely endorsed that palliative care (PC) principles should be integrated into the routine care of all children diagnosed with cancer, not only those at end of life (1). However, paediatric health professionals report receiving little…

Tags: 2015, Bouffet E, Friedrichsdorf S, Greenberg M, Husain A, Liben S, Paediatrics & Child Health, Pole JD, Rapoport A, Siden H, Whitlock J, Widger K, Wolfe J

Pediatric palliative care in Canada

In Knapp, Madden & Fowler-Kerry (Eds.) Pediatric Palliative Care: Global Perspectives. Springer Publishing, 301-321.

Tags: 2012, Cadell S, Davies B, Siden H, Steele R, Widger K

A novel classification system for research reporting in rare and progressive genetic conditions

Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories.…

Tags: 2019, Andrews G, Beumer D, Charting the territory, Developmental Medicine & Child Neurology, Goez Helly, May 2019 List, Mostafavi S, Pawliuk C, Siden H, Steele R, van Karnebeek CDM

Charting the territory: Describing the functional abilities of children with progressive neurological conditions.

AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over…

Tags: 2017, Andrews GS, Charting the territory, Feichtinger L, Functional Abilities, Holsti L, Pediatric Evaluation Of Disability Inventory, Progressive Genetic Metabolic Or Neurological Conditions (pncs), Research in Developmental Disabilities, Siden H, Steele R, Tatla Sandy K

Paediatric palliative care research in Canada: Development and progress of a new emerging team

Paediatric palliative care is a field distinct from adult palliative care, although there are many overlaps in language, approach and philosophy. Several features, however, distinguish paediatric palliative care. The illnesses that affect children…

Tags: 2008, Cadell S, Davies B, Paediatrics & Child Health, Siden H, Steele R, Straatman L

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…

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

Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions

Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis,…

Tags: 2014, Andrews GS, Archives of Disease in Childhood, Backlog, Cadell S, Charting the territory, Davies B, Feichtinger L, Genetics, Journal Article, Metabolic, Neurodisability, PEDI Study, Siden H, Singh M, Steele R

Research priorities in pediatric palliative care: a delphi study

Pediatric palliative care is increasingly recognized to be a specialized type of care requiring specific skills and knowledge, yet, as found in several countries, there is little available research evidence on which to base care. Objectives: The goal…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study

The results from a pilot study are reported in this article, part two of a two-part paper. The experiences of parents (six mothers and two fathers) are described as their families transitioned to the Canuck Place Children's Hospice (CPHC) in Canada.…

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study

This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate…

Tags: 2008, Cadell S, Canada, Child, Davies B, Derman S, Health Planning, Health Services Needs And Demand, Hospices/organization & administration, Humans, International Journal of Palliative Nursing, Palliative Care, Pediatrics, Pilot Projects, Siden H, Steele R, Straatman L

Impact of research participation on parents of seriously ill children

Abstract Background: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of…

Tags: 2014, Andrews GS, Backlog, Cadell S, Caregivers, Feichtinger L, Journal Article, Journal of Palliative Medicine, research participation, Siden H, Smit Quosai T, Steele R

Impact of research participation on parents of seriously ill children.

BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns…

Introducing a Lexicon of Terms for Pediatric Palliative Care

2015

Tags: 2015, Backlog, Davies D, Journal Article, Macdonald ME, Paediatrics & Child Health, PEDI Study, Siden H, Spicer S, Vadeboncoeur C

Introducing a lexicon of terms for paediatric palliative care.

Tags: 2015, Davies D, Macdonald ME, Paediatrics & Child Health, Siden H, Spicer S, Vadeboncoeur C

Lexicon of Terms in Pediatric Palliative Care

PedPalASCNET-Lexicon-31-July2014-Final.pdf

This Lexicon has been developed through a collaborative process by the PedPalASCNET network members as a tool for clinicians and researchers to standardize the usage of common terms in the field of pediatric palliative care. The Lexicon reflects the…

Tags: 2014, Davies D, Macdonald ME, Siden H, Spicer S, Vadeboncoeur C

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

Telehealth: connecting with families to promote health and healing

Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for…

Tags: 2001, Backlog, Family, home care services, Journal Article, Journal Of Family Nursing, Siden H, Starr E, Telemedicine, Tredwell S, Young L

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

Using network analysis to map the formal clinical reporting process in pediatric palliative care: a pilot study

ABSTRACT: BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In…

Tags: 2011, Backlog, BMC Health Services Research, Journal Article, NET CV, Siden H, Urbanoski K

Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…

Tags: 2011, BMC Health Services Research, British Columbia, Community-institutional Relations, Continuity Of Patient Care, Hospice Care, Humans, Models Theoretical, Palliative Care, Pediatrics, Pilot Projects, Risk Management/ Organization & Administration, Siden H, Urbanoski K, Using Network Analysis To Map The Formal Clinical Reporting Process In Pediatric Palliative Care: A Pilot Study

Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?

Tags: 2009, Child, Child Preschool, Cox K, Derman S, Enteral Nutrition/ Adverse Effects, Female, Hartnett C, Humans, Infant, Journal Of Palliative Care, Male, Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?, Prognosis, Siden H, Soon GS, Straatman L, Terminal Care/ Methods, Tucker T

The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…

Tags: 2009, Ambulatory Care Facilities, Continuity Of Patient Care, Ham J, Miller T, Paediatrics, Paediatrics & Child Health, Palliative Care, Siden H, Straatman L, The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

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

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory

BACKGROUND: Children with progressive metabolic, neurological, or chromosomal conditions and their families anticipate an unknown lifespan, endure unstable and often painful symptoms, and cope with erratic emotional and spiritual crises as the…

Charting the Territory: Children and families living with progressive life-threatening conditions

OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents.…

Tags: 2015, Backlog, Charting the territory, Journal Article, Paediatrics & Child Health, Siden H, Steele R

The PIUO Study: Optimizing the Management of Pain and Irritability of Unknown Origin in Children with Severe Neurological Impairment (Poster)

PIUO+Study+Poster+-+Child-Bright+VS2022.pdf

Tags: Hermansen AM, Pain, PIUO, Siden H

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