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 3801–3825 of 4332 publications
The impact of a sibling's life-limiting genetic condition on adult brothers and sisters
It is estimated that rare diseases affect the lives of over three million people in the United Kingdom. Of these, a significant proportion are children and young people with genetic life-limiting or life-shortening conditions. This study used a qualitative app…
The impact of the social and physical environments on parent-healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study
OBJECTIVES: This study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of t…
The intersection of fetal palliative care and fetal surgery: Addressing mortality and quality of life
Over the last few decades, the fields of fetal surgery and maternal-fetal medicine have developed interventions aimed at modifying severe diseases in utero. Innovations in fetal approaches to congenital diaphragmatic hernia and myelomeningocele have shown cons…
The Lived Experiences of Nurses Caring For Dying Pediatric Patients
Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient's life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical discovery of stra…
The Need for a Shared Understanding: Domains of Care and Composition of Team in Pediatric Palliative Care Guidelines
Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in pediatrics. Five onl…
The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure
OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the con…
The presence and predictors of complicated grief symptoms in perinatally bereaved mothers from a bereavement support organization
The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally bereaved mothers (N = 121) up to 5 years postbereavement. The presence of complicated grief scores in the clinical range was 12.4%, which is higher…
The rights of the dying child and the duties of healthcare providers: the "Trieste Charter"
PURPOSE: The death of a child is a devastating and tragic event for all those involved. This charter aims to help healthcare workers and people assisting terminally ill children to recognize some important rights of the child, with some related suggestions. We…
The role of hospice in the transition from hospital to home for technology‐dependent children—a qualitative study
Aims and objectives To report parent and professional perspectives of step‐down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years, increasing numbers…
The role of palliative care in critical congenital heart disease
Patients with critical congenital heart disease are exposed to significant lifetime morbidity and mortality. Prenatal diagnosis can provide opportunities for anticipatory co-management of patients between palliative subspecialists and the cardiac care team. Th…
The Role of Pediatric Palliative Care in Complex Congenital Heart Disease: Three Illustrative Cases
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause…
The role of the courts in disagreements over the care of seriously ill babies
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
The spiritual needs of seriously ill children and their families
Background Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.
The Tragic Case of Charlie Gard
This Viewpoint summarizes the case of Charlie Gard and discusses implications of the court decision.
The Use of Dexmedetomidine in Pediatric Palliative Care: A Preliminary Study
OBJECTIVE: To evaluate the effect of dexmedetomidine infusions in patients with advanced malignancies, advanced heart disease, or after stem cell transplantation (SCT), who during end-of-life care had pain and/or agitation unresponsive to conventional therapie…
The utilization of palliative care units by children with cancer: A nationwide survey
Objective: The aim of this study was to investigate the availability and utilization of palliative care units among children with cancer in Japan. Methods: We conducted a nationwide cross-sectional survey of 368 palliative care units. We sent a self-reported q…
The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown.
OBJECTIVE: To determine the validity of using such data to id…
Towards culturally competent paediatric oncology care. A qualitative study from the perspective of care providers
In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different paediatric …