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 1651–1675 of 4332 publications
End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom
Background
Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services. The curre…
End-of-life care in children and adolescents with cancer: perspectives from a French pediatric oncology care network
BACKGROUND: In developed countries, cancer remains the leading cause of pediatric death from illness after the neonatal period.
OBJECTIVE: To describe the end-of-life care characteristics of children and adolescents with solid tumors (ST) or hematologic malign…
End-of-life care over four decades in a quaternary neonatal intensive care unit
Aim Death in the neonatal intensive care unit (NICU) commonly follows a decision to withdraw or limit life-sustaining treatment. Advances in medicine have changed the nature of life-sustaining interventions available and the potential prognosis for many newbor…
End-of-Life Decision Making Between Doctors and Parents in NICU: The Development and Assessment of a Conversation Analysis Coding Framework
We report the development and assessment of a novel coding framework in the context of research into neonatal end-of-life decision making conversations. Data comprised 27 formal conversations between doctors and parents of critically ill babies, recorded in tw…
End-of-life decision making in critical illness: Perspectives of Asian parents
OBJECTIVE: To explore parents' perspectives regarding end-of-life (EOL) decisions, factors and possible barriers that influence the EOL decision making process, and to understand parental preferences for communication about EOL care in an Asian population.
MET…
End-of-Life Decision-Making in Pediatric and Neonatal Intensive Care Units in Croatia-A Focus Group Study among Nurses and Physicians
Background and Objectives: Working in pediatric and neonatal intensive care units (ICUs) can be challenging and differs from work in adult ICUs. This study investigated for the first time the perceptions, experiences and challenges that healthcare professional…
End-of-life decisions and practices as viewed by health professionals in pediatric critical care: A European survey study
BACKGROUND AND AIM: End-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify similarities and dif…
End of life in patients under the care of paediatric palliative care teams. Multicentre observational study
Introduction: Around 2000 children and adolescents die each year in Spain, however, we know little about the particularities of deaths in paediatrics. The purpose of this study is to document the characteristics of patients who die in the care of paediatric pa…
[End of life in pediatrics]. [French]
When medicine proves to be powerless to cure a child suffering from cancer, there remains the path of accompaniment by what we call palliative care. This is very different from the treatments that have been administered up to now - since they are not intended …
End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences
BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of ho…
End of Life Therapeutic Videography in Pediatrics: Feasibility and Acceptability
Purpose: This study aimed to determine the feasibility and acceptability of using videography to alleviate the stress of anticipatory mourning in pediatric palliative care patients. A secondary aim was to expand palliative/end of life care research by performi…
Ensuring Equity and Inclusion in Virtual Care Best Practices for Diverse Populations of Youth with Chronic Pain
Poor access to care is a top patient-oriented research priority for youth with chronic pain in Canada, and the COVID-19 pandemic has exacerbated these concerns. Our patient-oriented project team engaged with marginalized and racialized youth with chronic pain …
Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership
Objective The James Lind Alliance (JLA) offers a method for better aligning health and care agenda’s with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucia…
Ethical Considerations in Ever-Expanding Utilization of ECLS: A Research Agenda
Technological advancements and rapid expansion in the clinical use of extracorporeal life support (ECLS) across all age ranges in the last decade, including during the COVID-19 pandemic, has led to important ethical considerations. As a costly and resource int…
Ethical Considerations in Oncology and Palliative Care Research During COVID-19
Background: Researchers and clinicians must collaborate to consider alternative approaches to conduct standard protocol activities and deliver interventions during the pandemic. The COVID-19 pandemic has required researchers at many institutions to modify trad…
Ethical decision-making climate, moral distress, and intention to leave among ICU professionals in a tertiary academic hospital center
BACKGROUND: Commentators believe that the ethical decision-making climate is instrumental in enhancing interprofessional collaboration in intensive care units (ICUs). Our aim was twofold: (1) to determine the perception of the ethical climate, levels of moral …
Ethical Issues around Death and Withdrawal of Life Support in Neonatal Intensive Care
Amongst all the traumatic experiences in a human life, death of child is considered the most painful, and has profound and lasting impact on the life of parents. The experience is even more complex when the death occurs within a neonatal intensive care unit, p…
Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digi…
Evaluation of an Electronic Medical Record Module for Nursing Documentation in Paediatric Palliative Care: Involvement of Nurses with a Think-Aloud Approach
Background: Paediatric palliative care (PPC) is a noncurative approach to the care of children and adolescents with life-limiting and life-threatening illnesses. Electronic medical records (EMRs) play an important role in documenting such complex processes. De…
Experience of Pediatric Patient Death, Moral Distress, and Turnover Intention among Pediatric Nurses at a Tertiary Hospital in South Korea: A Cross-Sectional Study
Background: Pediatric nurses are particularly vulnerable to moral distress and turnover due to frequent experiences with patient death combined with limited pediatric palliative resources and related support. Objective(s): This study examined pediatric nurses'…
Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study
BACKGROUND: Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents' roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights int…
Expert survey on coverage and characteristics of pediatric palliative care in Europe - a focus on home care
BACKGROUND: For children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. T…
Exploring Parental Decision Making for a Child With a Life-Limiting Condition: An Interpretive Description Study
The purpose of this study was to explore parents' and health care professionals' perception of parents' experiences in making decisions between acute and palliative therapies along the trajectory of their child's life-limiting condition. An interpretive descri…
Extremely Preterm Babies-Legal Aspects and Palliative Care at the Border of Viability
There are various legal considerations and rare decisions of courts in western countries concerning palliative care and the border of viability in cases of extremely preterm babies. Nevertheless, on the one hand, regulations and decisions of courts describe th…