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 1901–1925 of 4332 publications
The Paediatric Palliative Care Unit has been transformed into Home Care Unit during the COVID-19 pandemic. Is this transformation for the foreseeable future?
In the first wave of the coronavirus disease 2019 (COVID-19) pandemic, the declaration of the state of alert in Spain and the imposition of a lockdown on the population demanded the modification of multiple health care procedures and structures. In our hospita…
The Pediatric Palliative APRN: Leading the Future
Pediatric palliative advanced practice registered nurses (APRNs) leaders are essential in advancing the field of pediatric palliative care. With expertise in pediatrics and strong advocacy skills for children, APRNs are well suited to lead interprofessional cl…
The role of children's hospices in perinatal palliative care and advance care planning: The results of a national British survey
INTRODUCTION: Perinatal palliative care services are increasingly available globally, offering a range of clinical and psychological support services to families during pregnancy, in the neonatal period and following the death of a baby with a life-limiting or…
The Role of Surgical Care in Pediatric Patients Receiving Palliative Care (GP745)
Outcomes 1. Explain the role pediatric surgeons play in the care of children receiving palliative care 2. Express reactions to the data and propose how a new understanding of the incidence of surgical care in pediatric palliative care could change your practic…
The social and spiritual dimensions of parental experiences on end-of-life care of their child with cancer: A narrative review
OBJECTIVE: Having a child with cancer is a burdensome experience for parents. Nurses need to better understand beliefs, hopes, and values of parents to holistically support them, which may have an impact on grief and depression. Thus, the aim of this paper was…
The Supportive Care Clinic: A Novel Model of Embedded Pediatric Palliative Oncology Care
CONTEXT: Pediatric palliative care (PPC) improves quality of life and end-of-life outcomes for children with cancer, but often occurs late in the disease course. The Supportive Care Clinic (SCC) was launched in 2017 to expand outpatient PPC access. OBJECTIVES:…
The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this …
The unintended consequences of COVID-19 public health measures on health care for children with medical complexity
AIM: The aim of this work is to explore the unintended consequences of pandemic public health measures on health care service usage by children with medical complexity. BACKGROUND: Medical complexity is characterized by the presence of complex, chronic conditi…
The Unspeakable Nature of Death & Dying During Childhood: A Silenced Phenomenon in Pediatric Care
In pediatric settings, the concept of hope is frequently positioned as a fundamental aspect of care and at odds with the possibility and proximity of death. This arguably fosters silence about death and dying in childhood despite evidence indicating the benefi…
The Value of DNR Orders in the NICU: The Medical Staff Perspective
Purpose of Study In adults, code status and DNR orders have been established as an explicit guideline and are considered a component of the standard of care in the provision of quality end-of-life care. As most neonatal deaths occur after withdrawal of life-su…
Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer
For the sizeable subset of adolescents and young adults whose cancer is incurable, developmentally appropriate end-of-life discussions are critical. Standards of care for adolescent and young adult end-of-life communication have been established, however, many…
Training in Expression of Authentic Condolences in Healthcare: A Pilot Study
Background: Bereaved parents value receiving support from their children's health care teams. Pediatric residents are important members of the teams that care for children at end of life and can play a meaningful role in communication with bereaved families. Y…
TRANSFORMING CARE FOR YOUNG ADULTS WITH COMPLEX AND LIFE-LIMITING CONDITIONS
Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of Community…
Transition to adult services for young people suffering from life-limiting neurodevelopmental disabilities: A case series
Due to advances in medical care, a growing number of young people with life-limiting neurodevelopmental disabilities (LLNDDs) are now surviving into adulthood. However, the traditional model of care between pediatrics and adult medicine was fragmented and did …
Translating Research to Action: The Development of a Pediatric Palliative Cancer Care Advocacy Tool in Eurasia
PURPOSE: The Assessing Doctors' Attitudes on Palliative Treatment study was conducted in 11 Eurasian countries to assess physician knowledge of and structural barriers to integration of palliative care into pediatric oncology. After publication, regional colla…
Trauma-Informed Care: Pediatric Intensive Care Nurses at the Root of Children’s Safety and Trust
Any experience that a child perceives as threatening or detrimental and has long-term consequences for the child’s holistic health and welfare qualifies as trauma. Whether an experience is traumatic depends on the 3 E’s of trauma: the event, the experience of …
Trauma Informed Ethics Consultation
We argue for the addition of trauma informed awareness, training, and skill in clinical ethics consultation by proposing a novel framework for Trauma Informed Ethics Consultation (TIEC). This approach expands on the American Society for Bioethics and Humanitie…
Uncertainty and Perinatal Post‐Traumatic Stress Disorder in the Neonatal Intensive Care Unit
Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post‐traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertaint…
Understanding parent experiences of end-of-life care for children: A systematic review and qualitative evidence synthesis
BACKGROUND: An estimated 21 million children worldwide would benefit from palliative care input and over 7 million die each year. For parents of these children this is an intensely emotional and painful time through which they will need support. There is a lac…
Unraveling EPSDT and Pediatric Hospice Care: An Exploratory Policy Analysis
Background: Medicaid is the most common of health care benefits for children at end of life. Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) presents a complex policy scenario for children enrolled in the Medicaid hospice benefit, and specifical…
Update on the palliative care approach at the pediatric intensive care unit
Pediatric palliative care aims at improving the care and quality of life of children who are terminally ill or have a fatal prognosis. In the hospital setting, end-of-life decisions and treatments are common in intensive care units. This is why the integration…
USE OF MOBILE COLD SHEETS IN PAEDIATRIC HOSPICE CARE
After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making opportunities …
Use of the interRAI PEDS HC in children receiving home care in Ontario, Canada
BACKGROUND: There is no standard assessment tool for pediatric home care recipients in Canada, limiting the availability of comparable, population-based data. The objective of this study was to describe pediatric home care recipients who were part of a pilot i…
Using Communication Tools to Explore Young Siblings' Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Siblings of children with palliative care needs often suffer feelings of being neglected, and their needs for information and involvement are frequently unmet. This study aims to explore the experiences and feelings of siblings of children with palliative care…