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 2351–2375 of 4332 publications
Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study
Outcome measurement in pediatric palliative care (PPC) is receiving increasing attention. The FACETS-OF-PPC, a multidimensional outcome measure for children with severe neurological impairment, has been developed and partly validated. This study aimed to concl…
Venous Thromboembolism among Critically Ill Children: A Narrative Review
Venous thromboembolism (VTE) is a leading cause of morbidity and mortality among hospitalized patients, including children. In recent years, it has become clear that hospitalization and critical illness bestow an increased VTE risk in pediatrics and relate to …
Viability and thresholds for treatment of extremely preterm infants: survey of UK neonatal professionals
BACKGROUND: Decisions about treatments for extremely preterm infants (EPIs) born in the 'grey zone' of viability can be ethically complex. This 2020 survey aimed to determine views of UK neonatal staff about thresholds for treatment of EPIs given a recently re…
Viral gene therapy for paediatric neurological diseases: progress to clinical reality
In the era of genomic medicine, diagnoses of rare paediatric neurological diseases are increasing. Many are untreatable and life-limiting, leading to an exceptional increase in gene therapy development. It is estimated that 20 gene therapy products will have r…
"We're performing improvisational jazz": Interprofessional pediatric palliative care fellowship prepares trainees for team-based collaborative practice
CONTEXT: Interprofessional education (IPE) prepares clinicians for collaborative practice, yet little is known about the effectiveness of postgraduate IPE. OBJECTIVE(S): This is the first study to describe educational outcomes of an interprofessional fellowshi…
What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents
BACKGROUND: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, par…
What Do We Know about Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?
Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was conducted from…
What matters to children and families facing advanced cancer? Identification of priority outcomes to improve paediatric palliative care in Turkey and Jordan
Background: The global incidence of cancer is increasing, and the Middle East is projected to be one of the most impacted regions. Increasing number of people would benefit from palliative care (PC), but access is poor, especially for children. Individuals wit…
Whom are we seeking to protect? Extremely preterm babies and moral distress
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of …
'With every fibre of their being': Perspectives of healthcare professionals caring for children with non-malignant life-limiting conditions
BACKGROUND: Children with non-malignant life-limiting conditions (NMLLCs) constitute the largest proportion of children requiring palliative care. In part, due to technological advances, growing numbers of such children are experiencing improved survival. Care…
Withholding and withdrawing treatment in pediatric intensive care. Update of the GFRUP recommendations
In 2005, the French-speaking task force on pediatric critical and emergency care [Groupe Francophone de Réanimation et d'Urgences Pédiatriques (GFRUP)] issued recommendations on withholding and withdrawing treatments in pediatric critical care. Since then, the…
A Concept Analysis of Neonatal Palliative Care in Nursing: Introducing a Dimensional Analysis
Despite the increasing need for neonatal palliative care, it is not adequately implemented in practice. This analysis aimed to clarify the dimension of the neonatal palliative care concept to increase understanding of the concept to give more insight into clin…
'A confident parent breeds a confident child': Understanding the experience and needs of parents whose children will transition from paediatric to adult care
Transitional care for young people with long-term conditions emphasizes the importance of supporting parents, particularly in relation to promoting adolescent healthcare autonomy. Yet, little practical guidance is provided, and transitional care remains subopt…
Adaptation and Feasibility of the interRAI Family Carer Needs Assessment in a Pediatric Setting
Family carers of children with serious illness contribute many hours of medical care in addition to usual daily care. Assessing the needs and supports of family carers is not routine practice. This study is the first to utilize the interRAI Family Carer Needs …
Advance Care Planning for Adolescents and Young Adults with Cancer: A Retrospective Case Note Audit from a Regional Specialist Center in the United Kingdom
The extent of Advance Care Planning (ACP) among Adolescent and Young Adult (AYA) cancer patients is not well characterized. This retrospective case note audit scrutinized the records of all AYA patients (aged 16-25 years) known to a regional specialist center …
Advances and Challenges in European Paediatric Palliative Care
Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's palliative care …
Advances in pediatric psychooncology
Purpose of reviewThis article reviews the current literature on psychosocial care of children with cancer with particular focus on evidence-based standards of care, including developments in systematic distress screening, utilization of patient-reported outcom…
Advancing pediatric palliative care in a low-middle income country: an implementation study, a challenging but not impossible task
BACKGROUND: The disparities in access to pediatric palliative care and pain management in Latin America remains an unaddressed global health issue. Efforts to improve the development of Palliative Care (PC) provision have traditionally targeted services for ad…
Adverse Events During Intrahospital Transport of Critically Ill Children: A Systematic Review
Intrahospital transport of a critically ill patient is often required to achieve a diagnostic and/or therapeutic objective. However, clinicians who recommend a procedure that requires transport are often not fully aware of the risks of transport. Clinicians in…
After an end-of-life decision: Parents' reflections on living with an end-of-life decision for their child
AIM: Parents' role as end-of-life decision-makers for their child has become largely accepted Western health-care practice. How parents subsequently view and live with the end-of-life decision (ELD) they made has not been extensively examined. To help extend u…
A meta-ethnographic study of fathers' experiences of caring for a child with a life-limiting illness
BACKGROUND: There is a growing body of qualitative studies examining parents' experiences of caring for a child with a life-limiting condition, coinciding with recent evidence that indicates an increasing incidence of paediatric life-limiting conditions. Howev…
A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address t…
A Mixed-Methods Quasi-Experimental Study on Perspectives Among Physicians and Nurses Regarding Use of Palliative Care Teams in the Pediatric Intensive Care Unit After Out-of-Hospital Cardiac Arrest
BACKGROUND: Nationally, only one-third of children survive to hospital discharge after initial presentation with out-of-hospital cardiac arrest (OHCA). Of those children who survive, less than 25% leave the hospital at their functional baseline. Given these po…
A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform t…