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 163 publications
Circle of light education model: Death education for children in end of life care
This study delves into the Circle of Light educational framework, focusing on death education for children receiving end of life care. It highlights the importance of such education in fostering psychological and spiritual well-being and alleviating death-rela…
Pediatric End-of-Life Decision-Making in Mainland China: Case-Based Analysis of Illness Narratives
BackgroundPediatric palliative care in Mainland China is still developing. Biological, psychological, and social factors may change during the course of illness and after the child's death.ObjectivesThis study examines pediatric end-of-life decision-making in …
Pediatric intensive care nurses' perspectives on the quality of dying and death among hospitalized children: A Cross-Sectional Study
Background: Nurses are continuously present at the bedside and work closely with both children and families; therefore, their perspectives can provide a detailed understanding of end-of-life care. This study examined the quality of dying and death among hospit…
Silent wounds: violence and adverse experiences in parents caring for terminally ill children in palliative care
BACKGROUND: Primary caregivers of paediatric palliative care patients-mostly women-are disproportionately exposed to adverse events and violence, both directly related to the experience of disease and to other stressful life events. These experiences have been…
Whispers of Comfort: Filipino Pediatric Palliative Nurses’ Insights on Holistic Care at New Hope Foundation, China
Purpose of the Study: This study explored the lived experiences of Filipino pediatric palliative care nurses working at the New Hope Foundation in China. It sought to understand how these nurses deliver holistic care to terminally ill children while managing e…
Assisted dying in the UK: please don't ignore the impact on children and young people
"The Leadbeater Terminally Ill Adults (End of Life) Bill, the latest UK bill on assisted dying, passed its second reading in the House of Commons in November 2024 after a short period of intense debate and extensive high-profile media coverage. However, these …
End of Life Care Practices at a Tertiary Cancer Centre in India: An Observational Study
Purpose: To assess the End of life care (EOLC) practices and the magnitude of futile care in a tertiary cancer center. To find out the barriers in provision of good EOLC in cancer patients. Methods: An observational study was done on 129 patients. Patients wer…
Listening to the multidisciplinary care team: exploring the pediatric palliative care needs in advanced chronic kidney disease
Background: Pediatric palliative care (PPC) aims to improve the quality of life for children with life-limiting conditions, such as advanced chronic kidney disease (CKD), from the time of diagnosis. However, PPC is not commonly integrated into routine pediatri…
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
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…
An Online Pediatric Palliative Care Education and Mentoring (Project ECHO) in Nepal: A Program Implementation Case Study and Assessment of Changes in Healthcare Providers' Knowledge, Confidence, and Attitudes
OBJECTIVES: The goal of this implementation study was to describe the implementation and evaluation of the impact of an online pediatric palliative care training program in Nepal, using the Project ECHO model. METHODS: The study used mixed methods, including a…
Children with cancer at the end of life in a middle-income country: integrated pediatric palliative care improves outcomes
BACKGROUND: In 2020, the Global Cancer Observatory reported 280,000 cases of childhood cancer worldwide, with a higher burden of disease and mortality rates in low- and middle-income countries. In 2022, the National Institute of Health reported 1708 new cases …
Experiences of nursing students providing end of life care for children and young people: A focus group study
BACKGROUND: End of life care for Children and Young People (CYP) is known to be an emotive area of practice. Previous studies involving qualified nurses have demonstrated that nurses feel they need more end-of-life care education, as well as a platform for sha…
Indi Gregory: A Wider Perspective on Children's Best Interests at the End-of-life
Extract
I. INTRODUCTION
The case of Indi Gregory is the last of a series of high-profile judgments regarding the end-of-life for terminally ill children. Such cases have typically generated wide controversy among scholars, practitioners, the general public, an…
Palliative team involvement in end-of-life care for Jewish and Muslim children in Jerusalem: A unique clinical and cultural context
Abstract
Objectives: Pediatric palliative care services improve the quality of life for children with life-limiting and life-threatening diseases, although little has been published about variation based on cultural and religious factors. This article sets out…
Places of Farewell: A Scoping Review Exploring Factors Influencing the Choice of Place of Death for Children when Death is Expected
Progression of ill health and death trajectories is different for children with a non-oncology diagnosis. As previous research has focused primarily on children with cancer diagnoses, this scoping review explored what factors influence the parent and/or child'…
The quality of nursing care in dying children from the nurses' point of view in Iran: A cross-sectional study
Background: Nowadays, the quality of nursing care is one of the most essential factors in health services and patient care. The quality of end-of-life care is of high importance, especially in vulnerable groups such as children. In the final stages of life, th…
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