Browse Items · Pediatric Palliative Care Library

Comparing parent loss with sibling loss

The death of a loved one is a traumatic loss for children, but little attention has been paid to how children's responses vary according to who died--a parent or a sibling. This article reports the findings of a comparison between children's…

The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.

BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such…

Tags: 2017, December 2017 List, Earle C, Gupta S, Journal of Palliative Medicine, Kassam A, Liu Y, Nelson K, Pole JD, Rapoport A, Sutradhar R, Vadeboncoeur C, Widger K, Wolfe J, Zelcer S

Initial development and psychometric testing of an instrument to measure the quality of children's end-of-life care

BACKGROUND: The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care. METHODS: The study purpose was to develop and test an instrument to measure…

Tags: 2015, Backlog, BMC Palliative Care, Journal Article, Steele R, Streiner DL, Tourangeau AE, Widger K

Exploring the Supportive Care Model as a framework for pediatric palliative care

2009

Tags: 2009, Backlog, Davies B, Journal Article, Journal Of Hospice & Palliative Nursing, Oberle K, Steele R, Widger K

Children's End-of-life Health Care Use And Cost

BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health…

Tags: 2017, Cause Of Death, Chalifoux M, Child, Health Care Costs, May 2017 List, Only Child, Pediatrics, Rapoport A, Seow H, Tanuseputro P, Terminal Care, Widger K

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…

Pediatric patients receiving palliative care in Canada: results of a multicenter review

OBJECTIVES: To describe the patients who received care from the 8 dedicated pediatric palliative care programs in Canada in 2002 and to estimate the number of children who may have benefited but did not receive services from these programs. DESIGN:…

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

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

Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies

The aim of this research is to examine the experience and impact of chemotherapy-related fatigue in recently diagnosed pediatric oncology patients. A repeated-measures, within-subjects, mixed (quantitative plus qualitative) design was used to…

Tags: 2008, Adaptation, Antineoplastic Agents/adverse effects, Backlog, Child, Davies B, Fatigue/chemically induced, Friedman D, Gudmundsdottir M, Humans, Journal Article, Journal Of Pediatric Oncology Nursing, McCarthy P, Neoplasms/drug therapy/psychology, Parents, Psychological, Questionnaires, Whitsett SF

A paediatric palliative care programme in development: trends in referral and location of death

Purpose To describe the formation of a paediatric palliative care programme providing care in hospital, at home or in hospice, ensuring continuity of care where the child and family desire. Study design Descriptive analysis was performed on referral…

Tags: 2010, Archives of Disease in Childhood, Backlog, Coulombe L, Johnston DL, Journal Article, Location Of Death, Rattray M, Splinter WM, Vadeboncoeur C

A qualitative study of advice from bereaved parents and siblings.

Despite a growing bereavement literature, relatively little is known about what families find helpful after a child's death and how best to assist them during the grieving process. In this qualitative study, the authors explored advice from 40…

Tags: 2011, Backlog, Barrera M, Davies B, Foster TL, Gerhardt CA, Gilmer MJ, Hogan N, IM, Journal Article, Journal of Social Work in End-of-Life & Palliative Care, Miller KS, sibling bereavement, Thompson AL, Vannatta K

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

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: A Survey Of Paediatricians And Family Practitioners

BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a…

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

Understanding How Bereaved Parents Cope With Their Grief To Inform The Services Provided To Them

Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing…

Tags: 2017, Achille M, Cohen SR, Humbert N, June 2017 List, Liben S, Macdonald ME, Petti A, Proulx MC, Qualitative Health Research, Stevenson M

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

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 on parents when a child has a progressive, life-threatening illness.

Children with neurodegenerative, life-threatening illnesses (NLTIs) account for a significant proportion of children requiring palliative care, yet there is a lack of of research that examines families' experiences. This grounded theory study…

Tags: 2006, Backlog, Child, Davies B, Disease Progression, Humans, International Journal of Palliative Nursing, Journal Article, Longitudinal Studies, Palliative Care, Parent-child Relations, Pediatrics, 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…

Do we have the power to create our own future as oncology nurses?

2005

Tags: 2005, Backlog, Canadian Oncology Nursing Journal, Female, Humans, Journal Article, Leadership, Male, Nurse's Role, Nursing, Nursing/psychology, Oncologic Nursing, Power (psychology), Sex Factors, Societies, Steele R, Students

Experiences of families in which a child has a prolonged terminal illness: modifying factors.

A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…

Tags: 2002, Backlog, Child, Communication, Family, Female, Humans, International Journal of Palliative Nursing, Journal Article, Longitudinal Studies, Male, Neurodegenerative Diseases/nursing, Non-U.S. Gov't, Parents/psychology, Research Support, Steele R, Terminal Care/psychology

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

A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation

Introduction
Pulmonary hemorrhage is an uncommon event in infants. It has been described most commonly in the sick premature neonate, older child, or adolescent with chronic cardiopulmonary disease. Acute idiopathic pulmonary hemorrhage in…

Tags: 1994, Acute Disease, Artificial, Backlog, Extracorporeal Membrane Oxygenation, Female, Hemorrhage/complications/therapy, Humans, Infant, Journal Article, Lung Diseases/complications/therapy, Male, Moler FW, Pediatric Pulmonology, Respiration, Respiratory Insufficiency/etiology/therapy, Sanders GM, Severity Of Illness Index, Siden HB

The emerging issue of euthanasia

2005

Tags: 2005, Adolescent, Archives Of Pediatrics & Adolescent Medicine, Backlog, Child, Decision Making, Euthanasia, Humans, Infant, Journal Article, Longitudinal Studies, Netherlands, Newborn, Pediatrics/statistics & numerical data, Preschool, Siden HB, Terminal Care

A qualitative approach to community and provider needs assessment in a telehealth project

OBJECTIVE: Needs assessment is a critical part of the design and implementation of telehealth projects. This study assessed the need for a telehealth link between a local community and a tertiary-care medical center. METHODS: The assessment was…

Tags: 1998, Backlog, British Columbia, Focus Groups, Humans, Journal Article, Needs Assessment, Non-U.S. Gov't, Program Development, Remote Consultation, Research Support, Siden HB, Telemedicine, Telemedicine Journal : The Official Journal Of The American Telemedicine Association

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

Browse Items (171 total)