Browse Items · Pediatric Palliative Care Library

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 Report On Location of Death in Paediatric Palliative Care Between Home, Hospice and Hospital

This retrospective study analysed data for 703 children who died from 2000 to 2006 to examine where children with a broad range of progressive, life-limiting illnesses actually die when families are able to access hospital, paediatric hospice…

An integrative approach to music therapy in pediatric palliative care.

Tags: 2014, Adolescent, British Columbia, Child, Child Preschool, Clark BA, Female, Hospices, Humans, Infant, Journal Of Palliative Care, Male, Music Therapy, Palliative Care, Program Development, Program Evaluation, Siden H, Straatman L, Young Adult

Best Practice In Provider/Parent Interaction

In this 3-year prospective grounded theory study in three pediatric settings, we aimed to develop a conceptualization of best practice health care providers (BPHCPs) in interaction with parents of children with complex, chronic, life-threatening…

Caregiver-reported nociceptive pain responses in children with significant neurological impairment (Poster)

Tags: Carleton B, Dewan T, Gnanakumar V, Holsti L, Johnston E, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

Characteristics of a pediatric hospice palliative care program over 15 years.

OBJECTIVES: Pediatric palliative care has seen the adoption of several service provision models, yet there is minimal literature describing them. Canuck Place Children's Hospice (CPCH) is North America's first freestanding pediatric hospice. This…

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

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

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

Children in palliative medicine: An overview

Tags: 2009, Davies B, Siden H

Contributions and recognition of patient partners in pediatric health research: a rapid scoping review protocol

Objective: The objective of this rapid scoping review is to: 1) assess the prevalence of acknowledgement and authorship of patient partners in pediatric health research; 2) understand how patient partners contribute through the research process; and…

Tags: acknowledgement, Authorship, Barrans C, Hermansen AM, patient and public involvement, patient partner, Patient Partner Recognition, patient-oriented research, Pawliuk C, Preprint, protocol, rapid review, Scoping review, Siden H

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…

Effect of pediatric palliative care programs on health care resource utilization and costs among children with life-threatening conditions: a systematic review of comparative studies.

BACKGROUND: Pediatric palliative care is a relatively new and evolving field, and the cost of pediatric palliative care programs is unclear. We conducted a systematic review to compare inpatient health care utilization and costs among children with…

Tags: 2015, Chavoshi N, Cmaj Open, Conte T, Mitton C, Siden H, Trenaman LM

Efficacy and safety of paediatric medicinal cannabis use: A scoping review

INTRODUCTION: The use of medicinal cannabis in the paediatric age group is increasing despite the lack of evidence for its efficacy or safety. OBJECTIVE: To map the available evidence on the efficacy and safety of medicinal cannabis in children and…

Tags: 2021, Cannabidiol, Cannabis, Chau B, Drug-resistant epilepsy, McKellar T, Medicinal Cannabis, Medicinal marijuana, Paediatrics And Child Health, Pawliuk C, Rassekh SR, Scoping review, Siden H, Tetrahydrocannabinoid

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

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain

Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with…

Evaluating treatment outcome in an interdisciplinary pediatric pain service

OBJECTIVE: To provide descriptive data evaluating outcome and treatment satisfaction among former pediatric patients and their parents seen in an interdisciplinary treatment program for complex pain syndromes. DESIGN: Retrospective telephone…

Tags: 2000, Backlog, Bellows D, Bennett S, Chambers C, Children, Court C, Huntsman E, Journal Article, Montgomery C, Oberlander T, Pain, Pain Research And Management, Sheriff M, Siden H, Therapeutics, Treatment Outcome

Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability

BACKGROUND: Pain is the most common symptom reported by caregivers of children with severe neurological impairment (SNI), a descriptive term for children with disorders affecting the neurological system across multiple domains. In SNI, cognition,…

Exploring Resident Physicians' Experiences Practicing in Pediatric Palliative Care: A Hermeneutic Method of Inquiry

Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…

Exploring what motivates parents of children living with medical complexity to participate in research studies: An Interpretive Phenomenology study (Poster)

Motivations Study Poster- CHILD-BRIGHT VS2022.pdf

Tags: 2022, Cook K, Hermansen AM, Kim L, Motivations Study, Parent Participation, Siden H

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

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.…

Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study

BACKGROUND: Cannabis is legal for recreational and medical use in Canada. Our aim was to explore family experiences using medical cannabis for children with severe conditions in the context of legalization. METHODS: We conducted a qualitative study…

Tags: 2021, Cmaj Open, Epilepsy, Family Attitudes, Gibbard M, July 2021 List, medical cannabis, Medicinal Cannabis, Mount D, Oncology, Pain Management, Parent Experiences, Pediatric Palliative Care, Rassekh SR, Siden H

Haloperidol as a palliative anti-emetic in a toddler: an evidence base challenge

2008

Tags: 2008, Antiemetics, Backlog, Evidence-based Medicine, Fatal Outcome, Haloperidol, Humans, Infant, Journal Article, Journal of Pain and Symptom Management, Male, Nausea, Palliative Care, Precursor Cell Lymphoblastic Leukemia-Lymphoma, Siden H

High dose opioids in pediatric palliative care.

Identifying Indicators Of Quality Pediatric Palliative Care: A Systematic Review

Pediatric palliative care (PPC) is a relatively new but rapidly expanding specialty area with a variety of models of care provision. Identification and validation of quality indicators specific to PPC is essential to accurately monitor and assess the…

Tags: 2016, Duc J, February 2017 List, Feudtner C, Johnston K, Journal of Pain and Symptom Management, Rapoport A, Siden H, Widger K, Wolfe J

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…

Improving the regulation of medical cannabis in Canada to better serve pediatric patients

Key points Children with chronic debilitating illness and pain are increasingly using cannabis for medical purposes, particularly when conventional treatment options have limited benefit or substantial adverse effects. Caregivers are becoming aware…

Innovations in Research with Medically Fragile Populations: Using Bulletin Board Focus Groups

A new group of medically fragile young adults are graduating from pediatric palliative care programs with limited expectations to live beyond early adulthood, and no comparable adult services to support their complex needs. Accessing this population…

Tags: 2014, Browne G, Bulletin Board Focus Group, Case Studies, Complexity, Cook K, Disability/Disabled Persons, End-Of-Life Issues, Focus Groups, Illness and Disease, Jack S, Siden H, Thabane L, The Qualitative Report, Young Adults

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

Introducing a lexicon of terms for paediatric palliative care.

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

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

Investing In Uncertainty: Young Adults With Life-limiting Conditions Achieving Their Developmental Goals.

BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This…

Tags: 2016, Adolescent, Browne G, Cook KA, Disabilities, Health Care Sciences & Services, Health-care, Jack SM, Journal of Palliative Medicine, May 2016 List, Palliative Care, Perspectives, Policy, Siden H, Thabane L, Transition, Youth

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

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…

Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review

Background Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

Tags: 2021, Adolescent, anxiety, Autism spectrum disorder, behaviour, Cannabis, Child, Children, Communication, Fletcher S, Huh L, hyperactivity, Ip A, Oberlander TF, October 2021 List, Pawliuk C, Rassekh SR, Siden H

Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review

BACKGROUND: Autism spectrum disorder (ASD) is a neurodevelopmental condition estimated to affect 1 in 66 children in Canada and 1 in 270 individuals worldwide. As effective therapies for the management of ASD core and associated symptoms are limited,…

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