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 1–25 of 45 publications
A call for equity-informed pediatric palliative care in Canada
Infants, children, and youth with serious illness, and their families continue to face inequities in access to pediatric palliative care across Canada. This paper explores what it means to take an equity-informed approach within this field and why such a shift…
Palliative Care Involvement and End-of-Life Care Intensity Among Adolescents and Young Adults with Nonmalignant Illnesses: A Population-Based Cohort Study in Ontario, Canada
Background: Adolescents and young adults (AYAs) with life-limiting
The invisible woman by Laura Macgregor
Article about Ont.-based writer has won the 2025 CBC Nonfiction Prize. Her story The Invisible Woman is at the bottom of the article.
Caregiving and Work
We're doing something a little bit different! We're taking a shot at making video along with the podcast! You can watch this episode on our YouTube channel, or as always, you can listen in your favorite podcast app.
This episode has two parts. We're first goi…
Drivers that decrease hospital-delivered care in children with medical complexity: Parental perspectives
Background and objective: Children with medical complexity (CMC) have chronic and severe conditions leading to medical fragility. CMC represent less than 1% of children but account for one-third of paediatric healthcare expenditures. Enrollment to a complex ca…
First Nations Peoples' perceptions, knowledge and beliefs regarding stillbirth prevention and bereavement practices: A mixed methods systematic review
Background: First Nations Peoples endure disproportionate rates of stillbirth compared with non-First Nations Peoples. Previous interventions have aimed at reducing stillbirth in First Nations Peoples and providing better bereavement care without necessarily u…
When a Child Dies: Racialized Father's Experiences of Objectification During Hospital Care
Understanding the meaning of loss for racialized immigrant fathers and addressing their experiences in a culturally competent manner is important in an increasingly ethnoculturally diverse country like Canada. Culture, customs and rituals influence fathers' gr…
An innovative hybrid palliative care fellowship program: empowering pediatricians and enhancing care for children in resource-limited settings
Objective To describe the development and implementation of a 1-year 'Hybrid' Pediatric Palliative Care (PPC) Fellowship, which includes both clinical and online learning to train paediatricians as specialists and leaders in paediatric palliative care in South…
Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic
Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic.
Methods: In this qualitative study, parents of a child (< 18 years) who died during the …
Pediatric palliative care in Canada
Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels. PPC is recognized …
Supportive care for cancer-related symptoms in pediatric oncology: a qualitative study among healthcare providers
Background: The aim of this study is to gain insight into the clinical experiences and perceptions that pediatric oncology experts, conventional healthcare providers, and complementary and alternative medicine (CAM) providers in Norway, Canada, Germany, the Ne…
The meaning of dying and death for children, their carers, and families: a scoping review
Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life.
Methods: A scoping review of the intern…
"You're on a Rollercoaster, Just Hold On": The Lived Experience of the Dyad Following a Fetal Death
Purpose: Pregnancy and birth is often a joyous period for a dyad. In the instance of fetal death, however, dyads are met with a devastating loss of their child, the hope for the future, and the new reality of becoming a bereaved parent. The purpose of this qua…
Clinician views on and ethics priorities for authorizing medical cannabis in the care of children and youth in Canada: a qualitative study
BACKGROUND: The use of cannabis for medical purposes by pediatric patients is expanding across Canada; however, supporting evidence, federal regulations and treatment guidelines are lacking. To understand factors affecting treatment decisions in this landscape…
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 chronic pain …
From Pediatric to Adult Palliative Care Service: The Continuity of Care
Background/aims: Define a gradual transition from pediatric to adult palliative care able to support adolescent patients (pts) with chronic and progressive diseases and their family.
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous incidences …
Building a culture of engagement at a research centre for childhood disability
Engaging patients and family members as partners in research studies has become a widespread practice in healthcare. However, relatively little has been documented about what happens after the research study ends. For example, is patient and family engagement …
How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada
Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of he…
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 of evidence…
Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review
INTRODUCTION: Transition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and psychosocial outcome…
Considering medical assistance in dying for minors: the complexities of children's voices
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to ext…
Genome Sequencing as a Diagnostic Test in Children With Unexplained Medical Complexity
IMPORTANCE: Children with medical complexity (CMC) represent a growing population in the pediatric health care system, with high resource use and associated health care costs. A genetic diagnosis can inform prognosis, anticipatory care, management, and reprodu…
Healthcare utilization and costs of pediatric home mechanical ventilation in Canada
BACKGROUND: Children using home mechanical ventilation (HMV) live at home with better quality of life, despite financial burden for their family. Previous studies of healthcare utilization and costs have not considered public and private expenditures, includin…
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for …
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