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 301–325 of 4332 publications
The role, contribution and impact of independent nurse prescribers and advanced nurse practitioners to the children's hospice workforce
The care needs of babies, children and young people who use children's hospices have changed over the last decade, with children living for longer, with more complexity. Children's hospice workforces have evolved to continue to meet these needs, including a gr…
The role of nurses in parents' help-seeking and support-seeking behaviors in pediatric palliative care: A qualitative study
Purpose
This study aimed to explore parents' help-seeking behaviors in pediatric palliative care and the role of nurses in this process.
Design and methods
This descriptive qualitative study included 15 parents of children hospitalized in a pediatric palliativ…
The Use of Patient-controlled Analgesia for Children Requiring Symptom Management at End of Life: A Scoping Review
Background Pain is the most common and distressing symptom for children at the end of life, with management challenges causing significant distress for patients and caregivers. Patient-controlled analgesia allows self-administration of preset medication doses …
Through the nurse's lens: Bereavement photography and creative interventions in nursing care
Art has long supported healing, and, in nursing, creative practices such as music, writing, and photography enhance holistic care by fostering connection, emotional well-being, and comfort during end-of-life moments. Bereavement photography, particularly in ne…
Timing of Do-Not-Resuscitate Order Establishment Varies by Illness Trajectory and Clinical Context in Children Receiving Palliative Care: A Retrospective Cohort Study
Background
Do-not-resuscitate (DNR) orders in pediatrics are frequently analyzed as static outcomes, although they emerge through a longitudinal process shaped by evolving illness trajectories and repeated clinical encounters. Our primary objectives were to ch…
Training Healthcare Assistants for School-Based Care of Children Receiving Paediatric Palliative Care: A Post-Training Evaluation
Background/Objectives: Children in paediatric palliative care often face school attendance barriers due to complex health needs. This study describes post-training perceptions of a training program by a pediatric hospice team to prepare school care assistants …
Transfusion Use Among Children with Hematologic Malignancies Receiving Concurrent Hospice Care
Background
Patients with hematologic malignancies enroll in hospice at lower rates than other diagnoses, potentially due to loss of transfusion support.
Objective
This study evaluated transfusion use among children with hematologic cancers enrolled in home-bas…
Treatment Decision Making at Diagnosis for Children Presenting With Advanced Cancer in Low- and Middle-Income Countries
PURPOSE - Although most children diagnosed with cancer live in low- and middle-income countries (LMICs), research exploring decision making in these settings remains sparse. When children present with advanced cancer in LMICs, local centers may lack resources …
Trends and Causes of Neonatal Mortality in Canadian Neonatal Intensive Care Units
Objective To determine patterns and causes of neonatal deaths in Canadian neonatal intensive care units (NICUs) over the last decade. Study design All neonatal deaths reported by NICUs participating in the Canadian Neonatal Network 2010-2022 were divided retro…
Trends in mortality of the WHO-recommended diseases for palliative care in the Republic of Korea, 2014-2023
Background: The global burden of diseases requiring palliative care is increasing due to aging populations and rising non-communicable diseases. The WHO predicts an 87% increase in serious health-related suffering by 2060. In the Republic of Korea, more than h…
Trends in Palliative Care Consultation for Extremely Premature Neonate Nonsurvivors in the Intensive Care Unit
Background: Extremely premature infants (<28 weeks gestational age) have a greater risk of mortality and, when they survive, higher rates of significant neurological disability and need for medical care. As a result, extremely premature infants and their famil…
Trends in the Location of Death Among Children with Cancer in Japan
Background: Treatment outcomes of children with cancer have improved significantly in recent decades. Despite this, cancer remains the leading cause of mortality among children aged 5-9 years in Japan. The precise trends over time and the changing locations of…
"Trying to Find North": Fathers Voice the Nature of Their Bereavement
Fathers' lived experience of bereavement is not well understood. This article presents findings from a Heidegerrian phenomenological study, which aimed to describe fathers' bereavement. Fathers' bereavement is a life-long journey along which a father navigates…
Ultrasound-Derived Muscle Biomarkers as a Gateway toward Quantitative Pediatric Frailty in Palliative Care
Background: Adult frailty scales rely on performance tests that are rarely feasible in children. Quantitative muscle ultrasound (US) could provide an objective bridge, but its pediatric utility is untested.Objective: To explore whether US-derived biomarkers Z-…
Understanding Maternal Role in Caring for Children with Severe Cognitive Impairment in Paediatric Palliative Care: A Qualitative Pilot Study
Background/Objectives: Within Paediatric Palliative Care (PPC), motherhood in the context of severe cognitive impairment is shaped by unique emotional, relational, and identity-related challenges. Traditional understandings of maternal identity are strained wh…
Understanding Sleep Challenges in Pediatric Palliative Care: A Patient-Focused Scoping Review and Implications for Practice
Sleep disturbances are prevalent among children receiving pediatric palliative care (PPC) and have a substantial negative impact on the quality of life of both patients and their families. This scoping review aims to examine further key factors contributing to…
Under the Shadow of Ethical Dilemmas: A Qualitative Study of Pediatric Oncology Nurses' End-of-Life Care Experiences
Background: - Despite advances in pediatric oncology, end-of-life (EOL) care remains ethically and emotionally challenging for nurses, often resulting in moral distress and complex decision-making. While ethics in adult oncology and palliative care are well do…
Unidentified paediatric palliative needs: use of the Paediatric Palliative Screening Scale
Background:
Paediatric palliative care should be provided to children and adolescents with complex chronic, life-limiting or life-threatening conditions, from the time of diagnosis, throughout the life course and beyond death, ensuring continuity of care.
Aim…
Use of palliative care services in NICU patients undergoing tracheostomy: Enhancing decision-making and care with an underutilized discipline
Introduction: Palliative care provides a proactive, family-centered approach for infants with life-threatening conditions. We examined the frequency of palliative care consultations among NICU tracheostomy patients and their associated demographics, hypothesiz…
Using the Pediatric Oncology Facility Integrated Local Evaluation (PrOFILE) Tool to Evaluate and Improve Pediatric Oncology Systems in Cameroon: A Focus on National, Facility, and Financing Contexts
Background
Childhood cancers remain a major cause of morbidity and mortality in low- and middle-income countries (LMICs), where nearly 90% of the world's children live. In 2018, the World Health Organization (WHO) and St Jude Children's Research Hospital launc…
Values in the Neonatal ICU: Insights into Caregiver Priorities
Objectives: To identify and prioritize caregiver values related to high-quality care for infants hospitalized in the neonatal intensive care unit (NICU) and to examine variation in these values by caregiver and clinical characteristics.
Study design: Sixteen …
What are fathers' experiences of neonatal-perinatal palliative care? A Scoping review
Whilst there is a burgeoning body of research exploring parental experiences of neonatal-perinatal palliative care, a major limitation is fathers’ under-representation as research study participants. The paucity of literature relating to fathers’ experiences m…
What Is the Knowledge of Pediatric Nursing Staff About Palliative Care? A Cross-Sectional Greek Study
Introduction: Pediatric Palliative Care is a field that demands specific knowledge and skills.
Aim: The purpose of the study was to explore the knowledge of pediatric nursing staff concerning palliative care.
Methodology: In this multicenter, cross-sectional…
When facts are not fixed: rethinking shared decision making at the margins of neonatal viability
Parents and doctors face difficult decisions when a baby is born at the borderline of viability. Somehow, they must voice their values, shared concerns, and disagreements in a way that allows an initial decision about life-sustaining treatment to be made quick…
Whispers of Comfort: Filipino Pediatric Palliative Nurses’ Insights on Holistic Care at New Hope Foundation, China
Purpose of the Study: This study explored the lived experiences of Filipino pediatric palliative care nurses working at the New Hope Foundation in China. It sought to understand how these nurses deliver holistic care to terminally ill children while managing e…