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 3926–3950 of 4332 publications
Difficult conversations: Discussing prognosis with children with cystic fibrosis
Objectives * Describe how and when individuals with cystic fibrosis learn about prognosis with a life-limiting disease, specifically its progressive nature and the median life expectancy. * Describe the emotional impact of initial communication about prognosis…
Do specialist paediatric palliative care services benefit children and young people patients with life-limiting or life-threatening conditions and their families?
Background Children and young people (CYP) with life-limiting (LLC) and life-threatening (LTC) conditions represent a growing and significant patient population. The effective delivery of integrated, holistic palliative healthcare for patients with life-limiti…
Dying at lifes beginning: Experiences of parents and health professionals in Switzerland when an 'in utero ' diagnosis incompatible with life is made
OBJECTIVE: The disclosure of a diagnosis during pregnancy of a fetal malformation, which is incompatible with life, normally comes completely unexpectedly to the parents. Although a body of international literature has considered the topic, most of it comes fr…
Dying later, surviving longer
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population expands and …
Early Integration of Palliative Care for Children with High-Risk Cancer and Their Families
Despite increasing data to support pediatric palliative care (PPC) as an integral component of high-quality care for children with life-threatening conditions and their families, timely integration of PPC is offered inconsistently to children with high-risk ca…
Early introduction of palliative care and advanced care planning for children with complex chronic medical conditions: a pilot study
BACKGROUND: Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether …
Early neurodevelopmental outcomes of extremely preterm infants
Infants born at extreme preterm gestation are at risk for both death and disability. Although rates of survival have improved for this population, and some evidence suggests a trend toward decreased neuromotor impairment over the past decades, a significant im…
Early palliative care for children with cancer: A multi-institutional survey study of pediatric oncology patients and parents
Background: Based on strong recent evidence, clinical consensus is growing that early Palliative care (PC) integration for cancer patients is the optimal care model; however, PC remains underutilized in pediatric oncology. We conducted a multi-institutional st…
Effectiveness of Pediatric Palliative Care Education on Pediatric Clinicians
A lack of knowledge and skills in pediatric palliative care may create hesitation in caring for children with serious life-threatening conditions and their families. Our research examined the effectiveness of pediatric palliative care training for pediatric cl…
Elective ventilation to facilitate organ donation in infants with anencephaly: Perinatal professionals' views and an ethical analysis
Aim Following the elective ventilation and referral for organ donation of an infant with anencephaly, we sought local perinatal professionals' views of this practice. Methods Anonymous online survey: demographics, ethical viewpoints and potential public/matern…
Emergency care planning-are we discussing it, are we recording it, and are we acting on it? An audit of ECP implementation in children with life limiting conditions
Aim The use of Emergency care plans (ECPs) is recommended by 'Together for Short Lives', (TFSL) to prevent inappropriate escalation to futile interventions in children with incurable lifelimiting conditions (LLC). The aim was to assess compliance with TSFL gui…
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of thos…
Empowering bereaved parents in the development of a comprehensive bereavement program
Objectives * List innovative aspects of the bereavement program at St. Jude Children's Research Hospital (St. Jude) that will be presented with the help of bereaved parent mentors. * Describe the content and implementation of the various components of the bere…
End-of-life care for children with medical complexity: Does advance care planning matter?
Learning Objectives: For many children with medical complexity (CMC), early death is an inevitable outcome of their illness, making advance care planning (ACP) a vital component in the optimal care of this population. Studies evaluating the relationship betwee…
End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries
INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hi…
End of life care for infants, children and young people with life limiting conditions: summary of NICE guidance
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of diagnosis of a …
End of life care in paediatric neurodegenerative disease: A regional experience
Objectives: To identify barriers to delivering patient and family centred end of life care to children with neurodegenerative disease, of which seizures and myoclonic epilepsy is a significant symptom. To highlight good practice in delivery of end of life care…
End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who undergo SCT are…
End-of-life decision-making for children with severe developmental disabilities: The parental perspective
BACKGROUND AND AIMS: The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors influence…
End-of-life decision-making for newborns: a 12-year experience in Hong Kong
SETTING: Neonatal end-of-life decisions could be influenced by cultural and ethnic backgrounds. These practices have been well described in the West but have not been systematically studied in an Asian population.
OBJECTIVES: To determine: (1) different modes …
End-of-life decisions for fragile neonates: navigating between opinion and evidence-based medicine
The majority of neonatal deaths occur after a decision to limit life-sustaining interventions (LSIs). Decisions on when to withhold/withdraw LSIs in fragile neonates are among the most difficult decisions in paediatric practice. Two rigorous investigations she…
Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: An integrative review
BACKGROUND: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.
AIM: Identify current approaches to palliative care in the pediatric…
Estimating the global need for palliative care for children: A cross-sectional analysis
CONTEXT: The need for children's palliative care (CPC) globally is unknown. In order to understand the scope of the need and to advocate to meet it, more accurate estimates are needed. OBJECTIVES: To create an accurate global estimate of the worldwide need for…
Ethical Dilemmas in Postnatal Treatment of Severe Congenital Hydrocephalus
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with severe disa…
Ethical issues in neonatal intensive care units
On one hand, advances in neonatal care and rescue technology allow for the healthy survival or prolonged survival time of critically ill newborns who, in the past, would have been non-viable. On the other hand, many of the surviving critically ill infants have…