Published literature
Publications
Published children's palliative care research: browsable, searchable and filterable by the same taxonomy as researchers, groups and guides.
This library is curated by The Siden Research Team as part of the TRENDS in Pediatric Palliative Care newsletter and library. Learn more about TRENDS and The Siden Research Team and subscribe to read their monthly expert commentaries on their website.
Showing 26–45 of 45 publications
Moral Distress of Clinicians in Canadian Pediatric and Neonatal ICUs
OBJECTIVE: To quantify moral distress in neonatal ICU and PICU clinicians and to identify associated factors. DESIGN: A national cross-sectional survey of clinicians working in an neonatal ICU or PICU. Moral distress was assessed with the Moral Distress Scale-…
SPORcast – Podcast
A Podcast series discussing the Standards for Patient-Oriented Research from the west coast of Canada. Hosts: Beverley Pomeroy and Lisa Ridgway. SPORcast aims to inspire Patients / Families, Clinicians, Academics and Decision Makers to get involved and create …
Use of oral cannabis extracts in the pediatric palliative care setting: A retrospective chart review
"It Could Have Been Me": An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of th…
Retrospective Review of the Use of Transdermal Buprenorphine Patches (Butrans) in a Pediatric Population
Background: Buprenorphine is an opioid medication used for the treatment of moderate to severe pain. In Canada, buprenorphine is not indicated for use in the pediatric population and literature surrounding its use in pediatrics is limited. Our aim was to evalu…
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objec…
Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS)
Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foresee…
Medical assistance in dying: A paediatric perspective
The Supreme Court decision in Carter v. Canada (2015) has led to changes to the Canadian Criminal Code, such that physician-assisted death is now a legal option for consenting adult patients who have a 'grievous and irremediable medical condition' that causes …
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 End-of-Life Care…
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal com…
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 conditions. An…
Physician-hastened death in young children: Getting to underlying assumptions
Significant changes are occurring in Canada's health care system regarding physician-hastened death (PHD). In the Netherlands, where the Groningen Protocol is in place, euthanasia in now legal for infants and children. The present article considers whether PHD…
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 suboptimal care…
End- of- life decisions and minors: do minors have the right to refuse life preserving medical treatment? A comparative study
The principles of the right to informed consent and informed refusal are quite clear for competent adult patients. The right of a competent adult patient to give his informed consent before medical treatment can be started, is a patients' right that is recogni…
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