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 701–725 of 4332 publications
Supporting Indigenous Family Caregivers of Children with Life-Threatening and Life-Limiting Illness in One Canadian Province: Healthcare Providers' Perspectives
Background: Indigenous peoples in Canada endure lasting effects of colonialism including racism, marginalization, and social, political, and geographic inequities resulting in disproportionate rates of disease and inequitable healthcare. Indigenous infants and…
Supporting infants with severe perinatal diagnoses, their families and healthcare providers: development of a perinatal palliative care program
Background: Perinatal palliative care (PPC) provides essential support for families and healthcare providers at the end-of-life. Despite clear global need, structured PPC programs are not widely established.
Aim: To develop a PPC program that supports familie…
Supporting Parents of Infants With Chronic Critical Illness in the Transition From NICU to Home
Infants with chronic critical illness (CCI) are increasingly surviving to neonatal intensive care unit (NICU) discharge. Following discharge, parents of infants with CCI must navigate complex decision-making, provide direct intensive care, “including managing …
Systematic review of autistic representation in the treatment literature for pediatric chronic pain
Chronic pain disproportionately affects autistic children and young people, yet they are underrepresented in pain research. Research on psychological, physical, and pharmacological therapies for other conditions suggests modifications are required to ensure tr…
Talking about desire to die: Talking past each other? A framework analysis of interview triads with patients, informal caregivers, and health professionals
Objectives: Up to 40% of seriously ill patients develop a (temporary) desire to die which can lead to requests for assisted dying. Health professionals often feel uncertain about addressing these topics, while informal caregivers may feel guilty and left out. …
Task of Physical Therapy in Pediatric Palliative Care
According to the World Health Organization, pediatric palliative care (PPC) aims to prevent and alleviate suffering through early identification and treatment of physical, psychosocial, or spiritual symptoms. This study seeks to analyze physical therapy strate…
Teaching of Medical Ethics Regarding Children, Death and Dying, and Research at the Uniformed Services University of the Health Sciences (USUHS) During Its First Fifty Years
Introduction: The first class at USUHS took its initial course in medical ethics in 1977. I directed this course until recently when COVID first emerged. In this piece, I review what these students were taught during the first 3 of 8 class sessions involving c…
Teaching Sensitive Subjects Online: Lessons Learnt From the Pandemic and the Implications for Contemporary Nurse Education
Background
Covid 19 and the associated restrictions necessitated for an abrupt change to the way education was provided to nursing students.
Aims
This study aims to explore the views/opinions of third year children's nursing students and nurse educators of an…
"That Is What We Have Left of Her": The Significance of Transitional Objects After the Death of an Infant in a Norwegian Context
When an infant dies in a neonatal intensive care unit in Norway, healthcare professionals provide bereaved parents with objects intended to help them processing their loss. Such objects can be clothes, blankets, soft animal toys, hand- and footprints, hair, as…
The blue tick: WhatsApp as a care tool in pediatric palliative care
Background
Comprehensive care, which includes psychological support for pediatric palliative care (PPC) patients, addresses all aspects of the patient’s life. It focuses on managing disease-related challenges and identifying strategies for personal, relational…
The case for investigating the palliative needs of children in foster care: A call to action
Objectives/Goals: The purpose of this study was to document the publicly available literature, measurement tools, secondary data, and expert perspective on the intersectional care gaps and disparities of children with palliative needs in foster care. Methods/S…
The critical role of education in shaping nurses' attitudes and intentions towards neonatal palliative care: A network analysis
Abstract
Background
Neonatal palliative care is an essential component of comprehensive neonatal care; however, its implementation remains challenging worldwide, particularly in low- and middle-income countries due to limited resources, cultural barriers, and …
The Development Status and Five-Year Evolution of Pediatric Palliative Care in Mainland China
Background
Pediatric palliative care (PPC) should be integrated throughout the disease trajectory and recognized as a fundamental component of pediatric healthcare systems.
Aim
To describe the development level of PPC in mainland China and elucidate the changi…
The experience of men following stillbirth: the case of Israeli bereaved fathers
Purpose: This paper explores the impact of stillbirth among men in Israeli society, which is marked by strong pronatalist norms. It sought to evaluate the impact of perceived social expectations and interactions with family, friends, and healthcare providers o…
The first regional interdisciplinary paediatric palliative care (PPC) workshop for the Eastern Mediterranean Region: a groundbreaking collective step for PPC integration
Amidst the global disparities in providing Paediatric Palliative Care (PPC), the compounded realities in the Eastern Mediterranean region intensify the need for palliative care for children with cancer. This region hosts 12% of children needing PPC worldwide w…
"The good death": Experience of parents who have suffered the loss of a child in a pediatric intensive care unit. A phenomenological study
Aims
To explore the experience of families who have suffered the loss of a child in an Intensive Care Unit. This article specifically describes the experience of the “Good Death”, a concept that has emerged from the discourse of the informants.
Research method…
The "gray zone" in pediatric end-of-life care: bioethical and medico-legal reflections
Palliative care for children with incurable diseases represents one of the most complex challenges in pediatric medicine. It requires a delicate balance between continuing potentially ineffective therapies and ensuring comfort and dignity during the terminal p…
The home within care: exploring home-like design in paediatric/adolescent palliative care environments
This study explores the integration of home-like design elements in paediatric/adolescent palliative care inpatient units, drawing on perspectives from both medical and architectural professionals. Recognising the unique developmental and psychosocial needs of…
The impact of a children's palliative care education and mentoring program (Project ECHO) on healthcare providers' knowledge, confidence, and attitudes in Bhutan
Background: Palliative care services are unavailable for the vast majority of children in Bhutan. Children's palliative care has not been incorporated into training programs for health professions, leading to limited knowledge and awareness of how best to supp…
The Impacts of Legacy-Making Interventions in the Pediatric Palliative Care Setting
Introduction: Worldwide, millions of children experience life-limiting or life-threatening illnesses. Providing quality palliative care requires interventions that target the psychological, psychosocial, emotional, and spiritual needs of these children and the…
The implementation and strategy of triadic communication in pediatric oncology: a scoping review
Triad child-parent-professional communication is considered a priority in evaluating and optimizing therapeutic alliance in pediatric oncology. This scoping review aimed to map the existing evidence in implementation, influencing factors, and strategies of tri…
The Implementation of Memory-Making Kits for Families Enrolling in Home Hospice; A Pilot Program Aimed to Address Parental Grief
Background: Child loss is a grief population that requires specialized attention to the importance of legacy to the grieving process. Local Problem: Lack of pediatric hospice throughout the state led to a gap in psychosocial end of life (EOL) and bereavement c…
The Imprints of Neonatal Death: A Qualitative Study on Neonatal Intensive Care Nurses' Experiences of Neonatal Death
BACKGROUND: Grief can pose significant challenges in nurses' lives, impacting both their personal well-being and work performance. PURPOSE: The aim was to examine neonatal intensive care nurses' (NICU) experiences with neonatal death. METHODS: This study used …
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.
Themes in the Management of Pediatric Brain Death Contestation: Exploratory Qualitative Work From Multidisciplinary Health Professionals in the United States
Objectives: To explore health professionals' experiences of contested pediatric brain death/death by neurologic criteria (BD/DNC) cases, including factors contributing to conflict, resource needs and utilization, perceived utility of supports available, and ca…