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 101–125 of 163 publications
Palliative Care in Children With Heart Disease Treated in an ICU
OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life. DE…
Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated opt…
Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives
The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their child's tr…
Pediatric Resident Perception and Participation in End-of-Life Care
BACKGROUND: Despite advances in medical care, pediatric deaths are still an unfortunate reality. Most of these deaths occur within a hospital setting. End-of-life care is an important part of medical care for children with serious illnesses. Despite the import…
Physicians' attitudes in relation to end-of-life decisions in Neonatal Intensive Care Units: a national multicenter survey
BACKGROUND: End-of-life decisions for neonates with adverse prognosis are controversial and raise ethical and legal issues. In Greece, data on physicians' profiles, motivation, values and attitudes underlying such decisions and the correlation with their backg…
Preferred place of death in paediatric, teenage and young adult haemato-oncology patients: a retrospective review
OBJECTIVES: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine wh…
Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program
OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were…
Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy
Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the COVID-19 pande…
The Chameleon Project: A children's end of life care quality improvement project
Objective: NHS England's Marginal Rate Emergency Threshold (MRET) and Readmission Fund funded the Chameleon Project 2018 (Twitter account: @chameleonproje1), to improve children's end of life care. This funded a lead disability paediatrician with expertise in …
The Evolutionary Nature of Parent-Provider Relationships at Child's End of Life With Cancer
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their be…
The fragile spirituality of parents whose children died in the pediatric intensive care unit
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died …
Treatment limitation and advance planning: Hospital-wide audit of paediatric death
AIM: To examine paediatric deaths following withdrawal or withholding of medical treatment (WWMT) from a hospital-wide perspective and identify changes over a 10 year period. METHODS: A retrospective review of medical records was conducted for all paediatric i…
Use of subcutaneous fluids in palliative care with children: a case study
Quality of life is a major consideration in children's palliative care, particularly at the end of life. Optimal symptom management is crucial in maintaining quality of life, with the aim being to ensure the child is as comfortable as possible. Ensuring adequa…
Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions
CONTEXT: Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experienc…
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with …
Advanced care planning five years on: an observational study of multi-centred service development for children with life-limiting conditions
BACKGROUND: Advanced planning for end of life care (EOLC) is an essential component of care for children with life-limiting and life threatening (LLLT) conditions. We report the findings of a follow-up study (R2) completed five years after the initial review (…
A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice
More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative care to inf…
Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study
Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating rec…
Efficacy of the Paediatrics Palliative Care Team of Murcia according to the experience of the parents
Introduction: The care at the end of children's lives must be sensitive to the needs of the child and their family. An understanding of the illness is required from the perspective of parents faced with the death of their child, in order to improve quality and…
End-of-Life Milieu of Critically Sick Children Admitted to a Pediatric Hospital: A Comparative Study of Survivors versus Nonsurvivors
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived. Materials and Methods…
Hospital or Home? Where Should Children Die and How Do We Make that a Reality?
CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand loc…
Nurses' Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review
The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs Institute. The the…
Nurses' roles and challenges in providing end-of-life care in neonatal intensive care units in South Korea
BACKGROUND: Neonatal Intensive Care Unit (NICU) nurses in Korea often experience challenges in providing care for dying infants and their families. However, there is limited understanding about what contributes to the challenges related to end-of-life care. PU…
Palliative and end-of-life care for infants and their families in the NICU: Building a program of research
This article is a brief report on the building of a program of research to support palliative and end-of-life care for infants and their families in the neonatal intensive care unit.
Palliative extubation: five-year experience in a pediatric hospital
OBJECTIVE: To present the characteristics of pediatric patients with chronic and irreversible diseases who underwent palliative extubation. METHOD: This is a descriptive analysis of a case series of patients admitted to a public pediatric hospital, with chroni…