Browse Items · Pediatric Palliative Care Library

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…

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

Shifting Focus In Pediatric Advance Care Planning: From Advance Directives To Family Engagement

The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP…

Tags: 2016, Chavoshi N, Journal of Pain and Symptom Management, July 2016 List, Siden H

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

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

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…

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

Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study

Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore…

Tags: 2017, Andrews GS, Charting the territory, Friedrichsdorf SJ, Hamre K E, Hospice, Journal Of Pain Research, Life-limiting, Neuropathic Pain, October 2017 List, Pain and Irritability Project, Palliative, Pediatric Palliative Care, Postier A, Siden H, Steele R

Using Web Analytics and Social Media to Improve Knowledge Translation and Increase Patient Engagement

For the last several months our team of clinicians and health librarians have been collecting analytics data via Google Analytics, Twitter analytics, and MailChimp analytics to inform the following projects as part of an outreach strategy: The…

Tags: Health librarian, Hermansen AM, knowledge translation, Pawliuk C, poster, Research Methods, Robins S, Siden H, social media, web analytics

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

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

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

Introducing a lexicon of terms for paediatric palliative care.

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

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

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…

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

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…

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…

Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model.

When parents first meet their child, they take on the entwined joys and burdens of caring for another person. Providing care for their child becomes the basic expectation, during health and illness, through the developmental milestones, into…

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…

Resource Utilization Among Individuals Dying Of Pediatric Life-threatening Diseases

BACKGROUND AND OBJECTIVES: Very little information exists on the number of resources utilized by individuals living with and dying of pediatric life-threatening diseases (LTDs). This study quantifies end of life (EOL) resource utilization among the…

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, Adolescent, Analgesics/ Therapeutic Use, Carleton BC, Child, Developmental Disabilities/ Complications, Female, Humans, Male, Oberlander TF, Pain and Irritability Project, Pain Management/ Methods, Pain Research & Management, Pain/complications/ Drug Therapy, Physician Variability In Treating Pain And Irritability Of Unknown Origin In Children With Severe Neurological Impairment, Pilot Projects, Practice Patterns Physicians'/ Statistics & Numerical Data, Siden H

The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…

Tags: 2009, Ambulatory Care Facilities, Continuity Of Patient Care, Ham J, Miller T, Paediatrics, Paediatrics & Child Health, Palliative Care, Siden H, Straatman L, The Madison Clinic: Evaluation Of A Collaborative Outpatient Paediatric Palliative Care Clinic

Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?

Tags: 2009, Child, Child Preschool, Cox K, Derman S, Enteral Nutrition/ Adverse Effects, Female, Hartnett C, Humans, Infant, Journal Of Palliative Care, Male, Pediatric Enteral Feeding Intolerance: A New Prognosticator For Children With Life-limiting Illness?, Prognosis, Siden H, Soon GS, Straatman L, Terminal Care/ Methods, Tucker T

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

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

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

Research considerations in pediatric palliative care

Tags: 2011, Cadell S, Davies B, Siden H, Steele R, Straatman L, Widger K

Children in palliative medicine: An overview

Tags: 2009, Davies B, Siden H

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

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…

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

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

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

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