Overview

Pediatric palliative care and palliative medicine are my main areas of interest. Children and families living with life-threatening disease face a number of challenges. Pediatric palliative care is quite different than adult palliative care – there are different diseases, the trajectories are different, and the needs of children and families are different.

Longitudinal studies of children with life-threatening conditions, epidemiology of children with these condition, and outcomes of palliative care are areas of active inquiry.

I am also interested in pain assessment and pain management. Pain is not well understood in children who are cognitively normal, and is very poorly understood in children with neurological impairment. Finding new treatments and tools for assessing pain is important. I am specifically interested in some new and emerging areas in biological markers of pain in children. We are launching a new study of pathways to assess and treat pain/irritability in non-verbal children.

Publications

Librarian involvement in systematic reviews was associated with higher quality of reported search methods: a cross-sectional survey
Journal of Clinical Epidemiology
Colleen Pawliuk and Shannon Cheng and Alex Zheng and Harold (Hal) Siden
DOI: 10.1016/j.jclinepi.2023.111237
02/2024

Acute and Persistent Postoperative Functional Decline in Children with Severe Neurological Impairment: A Qualitative, Exploratory Study
Children
DOI: 10.3390/children11030319
2024

Removing barriers to accessing medical cannabis for paediatric patients
Paediatrics and Child Health (Canada)
DOI: 10.1093/pch/pxac129
2024

Infants, children, youth and young adults with a serious illness in British Columbia: a population-based analysis using linked administrative data
CMAJ Open
Elisa Castro Noriega and Harold Siden and M. Ruth Lavergne
DOI: 10.9778/cmajo.20220181
11/2023

Family Perspectives on In-Home Multimodal Longitudinal Data Collection for Children Who Function Across the Developmental Spectrum
Journal of Developmental & Behavioral Pediatrics
Katelynn E. Boerner and Leora Pearl-Dowler and Liisa Holsti and Marie-Noelle Wharton and Harold Siden and Tim F. Oberlander
DOI: 10.1097/DBP.0000000000001183
05/2023

Pain and symptom management in neurodevelopmental disorders: Sensory and nociceptive function/pain and symptom management
Neurodevelopmental Pediatrics: Genetic and Environmental Influences
DOI: 10.1007/978-3-031-20792-1_43
2023

Librarian Involvement in Systematic Reviews and Quality of Reported Search Methods: A Cross-Sectional Survey of Authors from Vancouver, BC
SSRN
DOI: 10.2139/ssrn.4541476
2023

An agenda to develop Pediatric Palliative care programs to serve children with life-threatening and life-limiting conditions in the Gulf Cooperation Council countries
Palliative Care and Social Practice
DOI: 10.1177/26323524231201868
2023

Intensity of end-of-life care among children with life-threatening conditions: a national population-based observational study
BMC Pediatrics
DOI: 10.1186/s12887-023-04186-9
2023

Developing competencies for volunteer navigators to support caregivers of children living with medical complexity: a mixed-method e-Delphi study
Palliative Care and Social Practice
DOI: 10.1177/26323524231209060
2023

Medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review
Child: Care, Health and Development
Sarah Fletcher and Colleen Pawliuk and Angie Ip and Linda Huh and S. Rod Rassekh and Tim F. Oberlander and Harold Siden
DOI: 10.1111/cch.12909
01/2022

The Parental Experience of Caring for a Child With Pain and Irritability of Unknown Origin
Journal of Pain and Symptom Management
DOI: 10.1016/j.jpainsymman.2021.07.026
2022

Neither the “Devil’s Lettuce” nor a “Miracle Cure:” The Use of Medical Cannabis in the Care of Children and Youth
Neuroethics
DOI: 10.1007/s12152-022-09478-y
2022

Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Healthcare Quarterly
DOI: 10.12927/hcq.2022.26778
2022

Evaluation of children with severe neurological impairment admitted to hospital with pain and irritability
BMC Pediatrics
DOI: 10.1186/s12887-022-03632-4
2022

Perspectives of pediatric oncologists and palliative care physicians on the therapeutic use of cannabis in children with cancer
Cancer Reports
DOI: 10.1002/cnr2.1551
2022

Rapid genome-wide sequencing in a neonatal intensive care unit: A retrospective qualitative exploration of parental experiences
Journal of Genetic Counseling
Caitlin E. Aldridge and Horacio Osiovich and Harold (Hal) Siden and Alison M. Elliott
DOI: 10.1002/jgc4.1353
04/2021

Symptoms, adverse events, and outcomes in the use of medicinal cannabis in children and adolescents with autism spectrum disorder: A scoping review protocol
JBI Evidence Synthesis
DOI: 10.11124/JBIES-20-00001
2021

Improving the regulation of medical cannabis in Canada to better serve pediatric patients
CMAJ
DOI: 10.1503/cmaj.202169
2021

Family attitudes about and experiences with medical cannabis in children with cancer or epilepsy: an exploratory qualitative study
CMAJ open
DOI: 10.9778/cmajo.20200212
2021

Charting the Territory: End-of-Life Trajectories for Children With Complex Neurological, Metabolic, and Chromosomal Conditions
Journal of Pain and Symptom Management
DOI: 10.1016/j.jpainsymman.2020.08.033
2021

Improving the regulation of medical cannabis in Canada to better serve pediatric patients,Améliorer la réglementation du cannabis médical au Canada pour mieux servir les patients pédiatriques
CMAJ
DOI: 10.1503/cmaj.202169-f
2021

Optimising the process for conducting scoping reviews
BMJ Evidence-Based Medicine
DOI: 10.1136/bmjebm-2020-111452
2021

Efficacy and safety of paediatric medicinal cannabis use: A scoping review
Paediatrics and Child Health (Canada)
DOI: 10.1093/pch/pxaa031
2021

Scoping review of symptoms in children with rare, progressive, life-Threatening disorders
BMJ Supportive and Palliative Care
DOI: 10.1136/bmjspcare-2019-001943
2020

Development and Implementation of a Survey to Assess Health-Care Provider’s Competency, Attitudes, and Knowledge About Perinatal Palliative Care
Journal of Palliative Care
DOI: 10.1177/0825859718790627
2019

A novel classification system for research reporting in rare and progressive genetic conditions
Developmental Medicine and Child Neurology
DOI: 10.1111/dmcn.14180
2019

Pediatric Palliative Care for Children with Progressive Non-Malignant Diseases
Children
Harold Siden
DOI: 10.3390/children5020028
02/2018

National Impact of the EPEC-Pediatrics Enhanced Train-the-Trainer Model for Delivering Education on Pediatric Palliative Care
Journal of Palliative Medicine
DOI: 10.1089/jpm.2017.0532
2018

A de novo mosaic mutation in SPAST with two novel alternative alleles and chromosomal copy number variant in a boy with spastic paraplegia and autism spectrum disorder
European Journal of Medical Genetics
DOI: 10.1016/j.ejmg.2017.07.015
2017

Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Journal of Pediatric Psychology
Stephenson, E. and DeLongis, A. and Steele, R. and Cadell, S. and Andrews, G.S. and Siden, H.
DOI: 10.1093/jpepsy/jsw053
2017

Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: Crosssectional, baseline results from an observational, longitudinal study
Journal of Pain Research
Friedrichsdorf, S.J. and Postier, A.C. and Andrews, G.S. and Hamre, K.E.S. and Steele, R. and Siden, H.
DOI: 10.2147/JPR.S138153
2017

Best Practice in Provider/Parent Interaction
Qualitative Health Research
Davies, B. and Steele, R. and Krueger, G. and Albersheim, S. and Baird, J. and Bifirie, M. and Cadell, S. and Doane, G. and Garga, D. and Siden, H. and Strahlendorf, C. and Zhao, Y.
DOI: 10.1177/1049732316664712
2017

Charting the territory: Describing the functional abilities of children with progressive neurological conditions
Research in Developmental Disabilities
DOI: 10.1016/j.ridd.2017.10.001
2017

Pediatric Palliative Care Program versus Usual Care and Healthcare Resource Utilization in British Columbia: A Matched-Pairs Cohort Study
Journal of Palliative Medicine
Tania Conte and Craig Mitton and Shannon Erdelyi and Negar Chavoshi and Harold Siden
DOI: 10.1089/jpm.2016.0177
11/2016

Shifting Focus in Pediatric Advance Care Planning: From Advance Directives to Family Engagement
Journal of Pain and Symptom Management
Harold (Hal) Siden and Negar Chavoshi
DOI: 10.1016/j.jpainsymman.2016.05.010
09/2016

Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research
Palliative Medicine
DOI: 10.1177/0269216315620945
2016

Investing in Uncertainty: Young Adults with Life-Limiting Conditions Achieving Their Developmental Goals
Journal of Palliative Medicine
Cook, K.A. and Jack, S.M. and Siden, H. and Thabane, L. and Browne, G.
DOI: 10.1089/jpm.2015.0241
2016

Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer
BMC Palliative Care
Widger, K. and Friedrichsdorf, S. and Wolfe, J. and Liben, S. and Pole, J.D. and Bouffet, E. and Greenberg, M. and Husain, A. and Siden, H. and Whitlock, J.A. and Rapoport, A.
DOI: 10.1186/s12904-016-0085-8
2016

Charting the Territory: Children and families living with progressive life-threatening conditions
Paediatrics & Child Health
Harold Siden and Rose Steele
DOI: 10.1093/pch/20.3.139
04/2015

Introducing a lexicon of terms for paediatric palliative care
Paediatrics & Child Health
Sharron Spicer and Mary Ellen Macdonald and Dawn Davies and Christina Vadeboncoeur and Harold Siden
DOI: 10.1093/pch/20.3.155
04/2015

Mortality Trends for Pediatric Life-Threatening Conditions
American Journal of Hospice and Palliative Medicine
DOI: 10.1177/1049909114524476
2015

Using Colors to Assess Pain in Toddlers: Validation of “The Rainbow Pain Scale”—A Proof-of-Principle Study
Journal of Pediatric Oncology Nursing
Mahon, P. and Holsti, L. and Siden, H. and Strahlendorf, C. and Turnham, L. and Giaschi, D.
DOI: 10.1177/1043454214555197
2015

Impact of Research Participation on Parents of Seriously Ill Children
Journal of Palliative Medicine
Rose Steele and Susan Cadell and Harold Siden and Gail Andrews and Trudy Smit Quosai and Leanne Feichtinger
DOI: 10.1089/jpm.2013.0529
07/2014

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.
American Journal of Orthopsychiatry
Susan Cadell and David Hemsworth and Trudy Smit Quosai and Rose Steele and Elizabeth Davies and Stephen Liben and Lynn Straatman and Harold Siden
DOI: 10.1037/h0099384
03/2014

Charting the territory: Symptoms and functional assessment in children with progressive, non-curable conditions
Archives of Disease in Childhood
Steele, R. and Siden, H. and Cadell, S. and Davies, B. and Andrews, G. and Feichtinger, L. and Singh, M.
DOI: 10.1136/archdischild-2013-305246
2014

Characteristics of a pediatric hospice palliative care program over 15 years
Pediatrics
Siden, H. and Chavoshi, N. and Harvey, B. and Parker, A. and Miller, T.
DOI: 10.1542/peds.2014-0381
2014

An integrative approach to music therapy in pediatric palliative care
Journal of Palliative Care
Clark, B.A. and Siden, H. and Straatman, L.
2014

Innovations in research with medically fragile populations: Using bulletin board focus groups
Qualitative Report
Cook, K. and Jack, S. and Siden, H. and Thabane, L. and Browne, G.
2014

Resource Utilization among Individuals Dying of Pediatric Life-Threatening Diseases
Journal of Palliative Medicine
Negar Chavoshi and Tanice Miller and Harold Siden
DOI: 10.1089/jpm.2013.0110
10/2013

Physician variability in treating pain and irritability of unknown origin in children with severe neurological Impairment
Pain Research and Management
Siden, H.B. and Carleton, B.C. and Oberlander, T.F.
DOI: 10.1155/2013/193937
2013

Up against the System: A Case Study of Young Adult Perspectives Transitioning from Pediatric Palliative Care
Nursing Research and Practice
Karen Cook and Harold Siden and Susan Jack and Lehana Thabane and Gina Browne
DOI: 10.1155/2013/286751
2013

Pediatric palliative care in Canada
Pediatric Palliative Care: Global Perspectives
DOI: 10.1007/978-94-007-2570-6_17
2012

Palliative Care for Children
Handbook of Palliative Care
DOI: 10.1002/9781118426869.ch15
2012

Research Considerations in Pediatric Palliative Care
Textbook of Interdisciplinary Pediatric Palliative Care
DOI: 10.1016/B978-1-4377-0262-0.00010-4
2011

Pediatric palliative care patients: A prospective multicenter cohort study
Pediatrics
Feudtner, C. and Kang, T.I. and Hexem, K.R. and Friedrichsdorf, S.J. and Osenga, K. and Siden, H. and Friebert, S.E. and Hays, R.M. and Dussel, V. and Wolfe, J.
DOI: 10.1542/peds.2010-3225
2011

Using network analysis to map the formal clinical reporting process in pediatric palliative care: a pilot study
BMC Health Services Research
Harold Siden and Karen Urbanoski
DOI: 10.1186/1472-6963-11-343
2011

Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: Charting the territory
BMC Pediatrics
Siden, H. and Steele, R. and Brant, R. and Cadell, S. and Davies, B. and Straatman, L. and Widger, K. and Andrews, G.S.
DOI: 10.1186/1471-2431-10-67
2010

The Madison clinic: Evaluation of a collaborative outpatient paediatric palliative care clinic
Paediatrics and Child Health
Siden, H. and Straatman, L. and Miller, T. and Ham, J.
2009

Haloperidol as a Palliative Anti-Emetic in a Toddler: An Evidence Base Challenge
Journal of Pain and Symptom Management
Harold B. Siden
DOI: 10.1016/j.jpainsymman.2007.10.001
03/2008

A report on location of death in paediatric palliative care between home, hospice and hospital
Palliative Medicine
Siden, H. and Miller, M. and Straatman, L. and Omesi, L. and Tucker, T. and Collins, J.J.
DOI: 10.1177/0269216308096527
2008

Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study.
International journal of palliative nursing
Steele, R. and Derman, S. and Cadell, S. and Davies, B. and Siden, H. and Straatman, L.
DOI: 10.12968/ijpn.2008.14.5.29492
2008

Families' transition to a Canadian paediatric hospice. Part two: results of a pilot study.
International journal of palliative nursing
Steele, R. and Derman, S. and Cadell, S. and Davies, B. and Siden, H. and Straatman, L.
DOI: 10.12968/ijpn.2008.14.6.30024
2008

Pain management for children with a developmental disability in a primary care setting
Pain in Children: A Practical Guide for Primary Care
DOI: 10.1007/978-1-59745-476-6_4
2008

Research priorities in pediatric palliative care: A delphi study
Journal of Palliative Care
Steele, R. and Bosma, H. and Johnston, M.F. and Cadell, S. and Davies, B. and Siden, H. and Straatman, L.
2008

Paediatric palliative care research in Canada: Development and progress of a new emerging team
Paediatrics and Child Health
Straatman, L. and Cadell, S. and Davies, B. and Siden, H. and Steele, R.
2008

The boy who refused an IV: a case report of subcutaneous clodronate for bone pain in a child with Ewing Sarcoma
Journal of Medical Case Reports
Harold Siden
DOI: 10.1186/1752-1947-1-7
03/2007

Post-surgical telehealth support for children and family care-givers
Journal of Telemedicine and Telecare
Lynne Young and Harold Siden and Stephen Tredwell
DOI: 10.1258/135763307779701149
01/2007

The Emerging Issue of Euthanasia
Archives of Pediatrics & Adolescent Medicine
Harold B. Siden
DOI: 10.1001/archpedi.159.9.887
09/2005

Challenges of teaching EBM
Canadian Medical Association Journal
H. Siden
DOI: 10.1503/cmaj.1041600
05/2005

Three patients and their drugs: A parallel case paper on paediatric opiate use and withdrawal
Paediatrics & Child Health
Harold B Siden and Kathleen Collin
DOI: 10.1093/pch/10.3.163
03/2005

High Dose Opioids in Pediatric Palliative Care
Journal of Pain and Symptom Management
Harold Siden and Nalewajek
DOI: 10.1016/s0885-3924(03)00071-x
05/2003

High dose opioids in pediatric palliative care [1]
Journal of Pain and Symptom Management
Siden, H. and Nalewajek, G.
DOI: 10.1016/S0885-3924(03)00071-X
2003

Telehealth: Connecting with Families to Promote Health and Healing
Journal of Family Nursing
Harold B. Siden and Lynne E. Young and Elizabeth Starr and Stephen J. Tredwell
DOI: 10.1177/107484070100700401
11/2001

Evaluating treatment outcome in an interdisciplinary pediatric pain service
Pain Research and Management
Bennett, S.M. and Chambers, C.T. and Bellows, D. and Court, C.A. and Huntsman, E. and Montgomery, C. and Oberlander, T.F. and Sheriff, M. and Siden, H.
DOI: 10.1155/2000/767058
2000

A Qualitative Approach to Community and Provider Needs Assessment in a Telehealth Project
Telemedicine Journal
HAROLD B. SIDEN
DOI: 10.1089/tmj.1.1998.4.225
01/1998

CHLORAL HYDRATE VS. MIDAZOLAM FOR SEDATION DURING NEUROIMAGING. • 778
Pediatric Research
James D'Agostino and Tom Terndrup and Harold Siden and Leo Hochauser
DOI: 10.1203/00006450-199604001-00800
04/1996

A report of four cases of acute, severe pulmonary hemorrhage in infancy and support with extracorporeal membrane oxygenation
Pediatric Pulmonology
DOI: 10.1002/ppul.1950180512
1994

Early assessment of hemodynamic status after repair of tetralogy of Fallot: A comparison of 24 hour (intensive care unit) and 1 year postoperative data in 98 patients
The American Journal of Cardiology
Lang, P. and Chipman, C.W. and Siden, H. and Williams, R.G. and Norwood, W.I. and Castaneda, A.R.
DOI: 10.1016/0002-9149(82)91236-X
1982

Research

Current Projects
I am the principal investigator of a CIHR-funded network, PedPalASCNet (Accessible, Sustainable, Collaborative Network in Pediatric Palliative Care), that has been together since 2004. We are a national network of clinicians and researchers in Pediatric Palliative Care representing multiple disciplines. We use a model of 3 lenses or prisms – biomedical/clinical, psychosocial, and health services – to examine the experience of children and families with life-threatening diseases. More information can be found at: http://pediatricpalliative.com

Smaller projects include modeling complex care services; economic evaluation of pediatric hospice care; examining whether major surgery is associated with developmental milestone losses in children with severe neurological impairment; observing how families simultaneously engage in curative care and in comfort care; exploring the “meaning” of a genetic diagnosis for families who live with rare diseases.

Research Group Members

Gail Andrews, Research Manager
Candice Barrans
Elisa CastroNoriega, Research Assistant
Mahnoor Faisal, Research Assistant
Anne-Mette Hermansen, Research Asst/Tech 4
Sharon Hou, Psychologist, Postdoctoral Fellow
Laesa Kim
Edlyn Lim, Research Librarian