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…

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

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

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

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 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

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

Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease

The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program…

Use of the interRAI PEDS HC in Children Receiving Home Care in Ontario, Canada

BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of…

Tags: Child, Female, Male, 2022, BMC Health Services Research, Doherty M, Epidemiology, Home Care, Human, Jones A, November 2022 List, Ontario, Palliative Therapy, Pilot Study, Prevalence, Thorburn-Winsor E, 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

Self-reported experiences of siblings of children with life-threatening conditions: A scoping review

Sibling relationships are one of the most long-lasting and influential relationships in a human?s life. Living with a child who has a life-threatening condition changes healthy siblings? experience. This scoping review summarized and mapped research…

Tags: 2022, 2032 SE2 - Parent Perspectives, Child, Critical Illness, Family, Family Health, Humans, Journal Of Child Health Care, scoping review Adaptation Psychological, Self Report, Sibling, Siblings psychology, Stremler R, Tay J, Widger K

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

Impact of specialized pediatric palliative care programs on communication and decision-making

OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO,…

Tags: 2019, April 2019 List, Children, Communication, Counseling, Decision-making, Medeiros C, Palliative Care, Patient Education & Counseling, Pediatrics, Specialized pediatric palliative care program, Streuli JC, Trenholm M, Widger K, Zuniga-Villanueva G

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

Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting

Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family…

Tags: 2020, Child, Family Caregivers, Health Services Insights, Informal caregivers, January 2021 List, Needs Assessment, Pediatric, Self Report, Stochitoiu IA, Surveys And Questionnaires, Vadeboncoeur C

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…

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

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