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 76–100 of 4332 publications
Emotional dysregulation as a moderating factor on the relationship between the severity of anxiety and depressive symptoms and high caregiving intensity among mothers caring for children diagnosed with life-limiting conditions
OBJECTIVE: Providing care for children with life-limiting conditions(LLCs) is an emotionally challenging experience that often exposes caregivers, particularly mothers, to considerable risk of psychological distress. The purpose of this study was to examine th…
End-of-Life Care Patterns by Disease Trajectory in Pediatric Intensive Care Units: A Multicenter Study
Background: Delays in end-of-life (EOL) decisions and prolonged life-sustaining treatments (LST) are common in pediatric intensive care units (PICUs), but the influence of underlying disease on EOL decision-making remains unclear. We compared EOL decision patt…
End-of-life care stress in korean pediatric nurses: A cross-sectional analysis of related perceptions, attitudes, and self-efficacy
Pediatric end-of-life (EOL) care imposes a significant emotional burden on nurses, often leading to elevated stress. Psychological factors, such as perception, attitude, and self-efficacy, are known to play critical roles in stress responses during EOL care in…
End-of-life circumstances and unanticipated deaths in a neonatal intensive care unit: a retrospective analysis
Background
Despite major advances in neonatal intensive care, mortality in neonatal intensive care units (NICUs) remains a persistent reality. Most deaths now occur after withholding or withdrawing life-sustaining therapies (WWLST), yet some remain sudden or u…
Engaging Bereaved Parent Educators in Pediatric End-of-Life Workshops: A Trauma-Informed Onboarding
Recognizing that pediatric end-of-life (EOL) scenarios occur infrequently and are distressing for trainees and other healthcare team members, our group created pediatric end-of-life care skills (PECS) simulation-based workshops to improve trainee competence fo…
Enhancing Early Integration of Pediatric Palliative Care: Evaluating a Clinician-Based Versus Criteria-Based Referral Process in Pediatric Oncology
Background/Objectives: Early palliative care referral for new oncologic diagnoses has been widely recognized as integral to comprehensive care, but there exists a paucity of research assessing referral patterns in pediatric oncology. The objective of this stud…
Enhancing psychosocial care at end of life: A novel simulation training program
OBJECTIVES: Providing psychosocial support to pediatric patients and their families at the end of life represents one of the most challenging yet vital aspects of healthcare practice. Despite the presence of grief and loss training in many pediatric healthcare…
Enhancing the Resilience of Bereaved Parents: Practical Experiences and Needs Perceived by Healthcare Professionals
Aims: To explore the practical experiences and perceived needs of healthcare professionals in fostering resilience among bereaved parents. Design: A qualitative descriptive study was conducted. Methods: Twenty‐seven healthcare professionals were recruited from…
Epilepsy in Paediatric Palliative Care: Prevalence, Clinical Correlations and the Development of a Consensus-Based Seizure Management Protocol
Abstract
Background and Objectives: Seizures and epilepsy are common in children with life-limiting illnesses, particularly in the context of severe neurological impairment. However, data on the clinical profile of these patients in paediatric palliative care …
Evaluating virtual reality for anxiety reduction in children and adolescents with life-limiting conditions: a randomized pilot study
BACKGROUND: Children and adolescents with life-limiting conditions (LLCs) often face distressing medical procedures, prolonged hospital stays, and other challenges, leading to heightened anxiety and psychological distress. To address these symptoms, psychologi…
Examining the relationship between neonatal nurses’ palliative care attitudes and compassion fatigue levels
Background Compassion fatigue may be associated with neonatal intensive care unit (NICU) nurses’ ability to provide quality palliative care. Understanding this relationship may contribute to the development of supportive strategies for neonatal nurses and neon…
Executive Summary of Society of Critical Care Medicine 2026 Guidelines on the Care and Management of Pediatric and Neonatal Intensive Care Patients at the End of Life
These Society of Critical Care Medicine 2026 guidelines provide evidence-based recommendations to improve end-of-life (EOL) care for critically ill infants and children in PICU (including cardiac ICU) and neonatal ICU. Using rigorous Grading of Recommendations…
Experiences of NICU Nurses Facing Perinatal Death: A Phenomenological Study
Background: Perinatal death in Neonatal Intensive Care Units (NICUs) represents one of the most emotionally challenging experiences for nurses. While parental bereavement has been widely studied, nurses’ experiences in neonatal end-of-life care remain insuffic…
Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit +
Background: Advance care planning is a strategy to define goals and preferences for future care and treatment aligned to patient values. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT) provides a holistic, family-oriented approach to involve …
Experience with difficult situations in perinatology: impact of empathy and death-related behaviors on stress in nurses and midwives
Objectives: Caring for newborns with life-limiting conditions represents one of the most demanding professional and emotional challenges for healthcare staff, particularly nurses and midwives. The aim of this study was to examine the relationship between empat…
Experiencing acute genomic care: perspectives from parents in the neonatal and paediatric intensive care units towards rapid genomic sequencing
Rapid genomic sequencing (rGS) is increasingly used in neonatal and paediatric intensive care units (ICUs) to inform diagnosis and guide management of critically ill infants and children. Although rGS has a high diagnostic yield and potential to influence trea…
Expert collaboration for safe perinatal stabilization of neonates with select critical congenital heart defects at non-cardiac centers
Objective: To evaluate mortality and morbidity among neonates with select critical congenital heart defects (cCHD) delivered and initially managed at a Level-III perinatal center without in-house paediatric cardiac surgery, and to determine how many required i…
Explaining the concepts of family vigilance theory in the context of anticipatory grief in mothers of children with life-threatening illnesse: A directed qualitative content analysis
Mothers of chronically ill children encounter distinct challenges throughout their child's illness journey. To identify predictive behaviors of anticipatory grief based on participants' perceptions within the cultural context of Iranian society. This qualitati…
Exploring challenges and opportunities in paediatric bereavement care: a qualitative study from a tertiary care hospital in Pakistan
Background
In Pakistan, most children with life-threatening illnesses present at advanced stages and succumb to death, leaving families emotionally traumatised. Parental bereavement leads to long-term psychosocial and financial hardships for families, thus hig…
Exploring Parental Needs in the Year Following Perinatal Loss
Purpose: To explore parents' holistic needs in the year after a perinatal loss experience. Study Design and Method: We used Wagner's Chronic Disease Model viewed through a holistic lens as a theoretical framework for this qualitative descriptive study. Wagner'…
Exploring parents' perspectives on health technology to support communication in home-based pediatric palliative care: a qualitative study
Background
Children eligible for palliative care represent a highly diverse population, making comprehensive, family-centered approaches essential. As many families value being at home and maintaining their daily activities and routines, healthcare services ne…
Extremely premature infant care: Reasonable progress or therapeutic fury?
Application of palliative comfort care versus neonatal intensive care for extremely premature births is a judgment fraught with uncertainty and risk, principally for the pregnant woman and family. Survival and good health are possible, but suffering, chronic h…
FACE-Rare: Protocol of a randomized controlled trial of a family-centered advance care planning intervention for families of children with rare diseases
Background: Children with rare diseases and their family caregivers must manage extraordinary care needs, significant symptom burdens, and uncertain prognoses. Pediatric Advanced Care Planning (pACP) is a promising communication-based approach to better suppor…
Factors Influencing Bereavement Care Competence in Midwifery Students: Regression and QCA Analysis
Background
Perinatal loss is a profoundly distressing experience for parents and can lead to long-term psychological challenges. Midwifery students often encounter bereaved parents during clinical placements but frequently feel unprepared to provide adequate s…