Browse Items · Pediatric Palliative Care Library

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

High dose opioids in pediatric palliative care.

Nutritional failure and cachexia in a pediatric palliative care population.

2006

Tags: 2006, Backlog, Cox K, Journal Article, Journal Of Investigative Medicine, Longitudinal Studies, NET CV, Siden H, Soon G, Straatman L

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…

The boy who refused an IV: a case report of subcutaneous clodronate for bone pain in a child with Ewing Sarcoma

ABSTRACT: BACKGROUND: Bone pain in malignancy can be challenging to treat. Bisphosphonates have been found to be useful in adults with bone pain, but there are no reports of their use in children for this indication. In pediatric palliative medicine…

Tags: 2007, Backlog, Journal Article, Journal Of Medical Case Reports, Longitudinal Studies, Siden H

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…

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…

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

Pediatric palliative care program versus usual care and healthcare resources utilization in British Columbia: a matched-pairs cohort study

BACKGROUND: Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting. OBJECTIVE: This research aims to provide a Canadian…

Tags: 2015, Backlog, Chavoshi N, Conte T, Erdelyi S, Journal Article, Journal of Palliative Medicine, Mitton C, Siden H

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

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

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

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

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

Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care

Advances in pediatric care have not provided the interdisciplinary support services required by those young adults with pediatric life-threatening conditions (pedLTCs) who live beyond childhood but have limited expectations to live past early…

Tags: 2013, Backlog, Browne G, Cook KA, Jack S, Journal Article, Nursing Research And Practice, Siden H, Thabane L

Physician variability in treating pain and irritability of unknown origin in children with severe neurological impairment

BACKGROUND: Pain and irritability of unknown origin (PIUO) is a challenging problem for nonverbal children with severe neurological impairments. PIUO is not associated with an identifiable source of nociceptive-inflammatory or neuropathic pain.…

Tags: 2013, Article #6, Backlog, Carleton BC, Journal Article, Oberlander T, Pain Research & Management : The Journal Of The Canadian Pain Society = Journal De La Societe Canadienne Pour Le Traitement De La Douleur, Siden H

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

Mortality Trends for Pediatric Life-Threatening Conditions

Internal data from the sole pediatric hospice in British Columbia were utilized to investigate mortality trends among children dying from life-threatening conditions. Characteristics of the sample (hospice) were compared to that of the population…

Tags: 2014, Backlog, Chavoshi N, Hospice, Illness, Journal Article, Life-threatening Conditions, Miller T, Mortality, Siden H, The American Journal of Hospice & Palliative Care

Using Colors to Assess Pain in Toddlers: Validation of "The Rainbow Pain Scale"-A Proof-of-Principle Study

Self-report, when available, is considered the ideal way to assess the intensity and other aspects of pain in children. However, self-report scales are often too complex cognitively for preschool-aged children (2-4 years). The Rainbow Pain Scale…

Tags: 2014, Backlog, Giaschi D, Holsti L, Journal Article, Journal Of Pediatric Oncology Nursing, Mahon P, Siden H, Strahlendorf C, Turnham 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

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

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…

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…

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

Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences

Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a…

Tags: 2020, Aldridge CE, December 2020 List, Decisional regret, Elliott AM, Genetic Counseling, genome-wide sequencing, Journal of Genetic Counseling, lived experience, Neonates, Osiovich H, Siden H

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

The Parental Experience of Caring for A Child with Pain and Irritability of Unknown Origin

Background and Objective : Approximately 73% of children with severe neurological impairment (SNI) can experience episodes of pain and irritability often of unknown origin (PIUO). Limited research exists on how these experiences of PIUO may affect…

Tags: 2021, Irritability, Journal of Pain and Symptom Management, Orkin J, Pain, Parmar A, Pediatrics, PIUO, Qualitative Inquiry, Rizakos S, September 2021 List, severe neurological impairment, 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,…

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

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…

Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer

Background Children with cancer are increasingly using cannabis therapeutically. Aim The purpose of this study was to determine the perspectives and practices of pediatric oncologists and palliative care physicians regarding the use of cannabis for…

Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth

Lack of guidance and regulation for authorizing medical cannabis for conditions involving the health and neurodevelopment of children is ethically problematic as it promulgates access inequities, risk-benefit inconsistencies, and inadequate consent…

Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences

Abstract Genome-wide sequencing (GWS) is increasingly being used in neonatal intensive care units. While studies have explored its clinical utility, little is known about parental experiences with this testing post-return of results. We conducted a…

Tags: 2020, 2022 Special Edition 1 - Parent Perspectives, Aldridge CE, Decisional regret, Elliott AM, Genetic Counseling, genome-wide sequencing, Journal of Genetic Counseling, lived experience, Neonates, Osiovich H, Siden H

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…

The Family Liaison : an integral part of our research team (Poster)

Hermansen_A_et_al_Family_liason_poster_2021.pdf

In caring for children with serious illness the clinician’s approach is always family centred. As such our clinical research team has continuously involved families in our studies beyond their role as participants in our research. A Family Advisory…

Tags: 2021, Family Liaison, Hermansen AM, Kim L, Parent Participation, Siden H

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

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

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

Tags: Carleton B, Dewan T, Gnanakumar V, Ketchum K, Oberlander T, Orkin J, PIUO, Richardson A, Siden H, Vadeboncoeur C

Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: a scoping review protocol

OBJECTIVE: The objective of this scoping review is to map and identify the symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder. INTRODUCTION: Autism spectrum disorder is a…

Tags: 2021, Adolescent, Autism spectrum disorder, Child, Delivery of Health Care, Fletcher S, Humans, Ip A, JBI Evidence Synthesis, Medical Marijuana, Medicinal Cannabis, Oberlander T, Parents, Pawliuk C, Review Literature as Topic, 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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