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 51–75 of 163 publications
Implementing a nurse-led paediatric palliative care service
BACKGROUND: Children with life-limiting illnesses are living longer. They have complex care needs and require specialised knowledge and skills, yet paediatric palliative care is still at its infancy in most settings worldwide. AIMS: To describe the process of …
Moral equivalence theory in neonatology
This article explores the ethical concept of "the equivalence thesis" (ET), or the idea that withdrawing and withholding life sustaining treatments are morally equivalent practices, within neonatology. We review the historical origins, theory, and clinical rat…
Neonatal Nurses' Perceptions and Needs of End-of-Life Care Practice: A Jordanian Qualitative Study
End-of-life (EOL) care for newborns is challenging and requires well-prepared nurses to provide the best care for the dying baby and to prepare and support parents during such a difficult experience. This study aimed to explore Jordanian neonatal intensive car…
Nurses' experiences of managing vulnerability when working with seriously ill children
BACKGROUND: Nurses who work with very unwell or dying children may experience intense sorrow and distress in response to loss, which can take an emotional toll on them, potentially affecting care provision. AIM: This study aimed to explore the experiences of c…
Palliative home-based care to pediatric cancer patients: characteristics and healthcare delivered
OBJECTIVES: Cancer patients constitute an important group in pediatric palliative care. Though the patients' home is the preferred place of care, little is known about the characteristics of patients attended by units that provide home assistance. Our objectiv…
Perceptible Signs of End of Life in Pediatric Intensive Care Patients
Background: How children die in pediatric intensive care units (PICUs) has been poorly described, and support for parents during this traumatic experience could be improved. Better information on perceptible signs of the end of life (EOL) in children may help …
Primary Caregivers Caring for a Child at End of Life in Saudi Arabia
BACKGROUND: Caring for children at end of life (EOL) can be devastating for primary caregivers who are responsible for the physical, social, and emotional needs of their dying child. Limited information was found on resources in Saudi Arabia to manage the impa…
Reimagining a children's palliative care educational programme for registered nurses in response to the COVID-19 pandemic
BACKGROUND: Children with life-limiting conditions are a unique population with multiple health and social care needs. Key literature indicates the need for education to support registered nurses providing care, including palliative care, to these children. In…
Shifting and intersecting needs: Parents' experiences during and following the withdrawal of life sustaining treatments in the paediatric intensive care unit
OBJECTIVES: To examine parents' perceptions of nursing care needs; including specific concerns, preferences and supportive actions for themselves and their dying child during and following the withdrawal of life support in the paediatric intensive care unit. R…
The Fraught Notion of a "Good Death" in Pediatrics
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, be…
Vulnerability of Inexperience: A Qualitative Exploration of Physician Grief and Coping after Impactful Pediatric Patient Deaths
Background: Caring for dying patients can result in burnout, stress, and emotional trauma for some physicians,1,2 particularly among trainees. Research is lacking that focuses on the emotional impact and coping techniques utilized by novice and experienced ped…
A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care …
Beyond technology, drips, and machines: Moral distress in PICU nurses caring for end-of-life patients
Moral distress is an experience of profound moral compromise with deeply impactful and potentially long-term consequences to the individual. Critical care areas are fraught with ethical issues, and end-of-life care has been associated with numerous incidences …
Challenges in preloss care to parents facing their child's end-of-life: A qualitative study from the clinicians perspective
INTRODUCTION: Bereavement care for parents predominantly focuses on care after child loss. However, Health Care Professionals (HCPs) feel responsible for supporting parents who are grieving losses in their child's end-of-life. Preloss care is tailored to the p…
Children's palliative care education and training: developing an education standard framework and audit
BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for…
Early palliative care is associated with less intense care in children dying with cancer in Alabama: A retrospective, single-site study
BACKGROUND: Regional studies show that children with cancer receive medically intense end-of-life (EOL) care, but EOL care patterns, including palliative care utilization in Alabama, remain unknown. METHODS: This was a retrospective study of 233 children (0-19…
Educational Priorities for Providing End-of-Life Care: Parent Perspectives
OBJECTIVES: Partnership with parents is a tenet of pediatric medicine; however, initiatives to include parents in education and research have been limited. Through focus groups, we included parents at the beginning of curriculum development by asking them to i…
Face-Validated Quality Indicators for Appropriateness Of End-Of-Life Care in Children With Serious Illness: A Study Using the RAND/UCLA Appropriateness Method
OBJECTIVE: To develop and face-validate population-level indicators for potential appropriateness of end-of-life care, for children with cancer, neurological conditions, and genetic/congenital conditions, to be applied to administrative health data containing …
Faith-sensitive end of life care for children, young people and their families
This article is part of an at a glance series on palliation and end of life care in paediatrics and focuses on the provision of faith-sensitive end of life care. Particular religions are discussed, with some key points for care of patients from some of the mos…
Fifteen-minute consultation: Paediatric organ and tissue donation
This article explores ways in which paediatricians can help increase awareness and embed organ and tissue donation in the end-of-life care process. This can save patient lives on the organ transplant waiting list, many of whom currently die prematurely. The in…
Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life: A National Study
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between …
Improving Neonatal Intensive Care Unit Providers' Perceptions of Palliative Care through a Weekly Case-Based Discussion
Objective: The primary objective was to evaluate the efficacy of a weekly palliative care-guided, case-based discussion of high-risk infants on Neonatal Intensive Care Unit (NICU) physician (MD) and Advanced Practice Provider (APP) perceptions of pediatric pal…