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 26–50 of 4332 publications
Breaking bad news by pediatric nurses: a scoping review
Background: Delivering bad news is a critical communication skill for nursing students. It requires sensitivity, empathy, and clarity, yet opportunities to develop this skill in clinical settings may be limited.
Aim: This review aims to explore how nursing stu…
Caregiver Preferences for AI-Supported Telemedicine in Pediatric Palliative Care: A Discrete Choice Experiment
Background
Asynchronous telemedicine may support home-based pediatric palliative care (PPC) by improving access to professional guidance and reducing caregiver uncertainty. Artificial intelligence (AI) may further enhance such services by supporting triage and…
Caregiver priorities and healthcare outcomes in a pediatric home care service for children with medical complexity: a quasi-experimental study
This study aimed to evaluate the outcomes of a pediatric home care service (PHCS) provided to children with medical complexity (CMC) and to identify and prioritize the unmet care needs of their caregivers. This quasi-experimental study was conducted from April…
Caring for Muslim Children at the End of Life: Faith-Informed Guidance for Pediatric Clinicians
Faith, religion, and spirituality are central pillars for many families making healthcare decisions for their children at the end of life. Within pediatrics, parents of critically ill patients draw on these beliefs for guidance, comfort, and strength.1, 2, 3 R…
Challenges and strategies in pediatric oncology palliative care in low-middle income countries: a systematic review
Background Annually, over 400,000 children aged 0-19 are diagnosed with cancer, with low-middle income countries (LMICs) facing lower cure rates and higher mortality. Most Asian nations, especially in Southeast Asia, have limited palliative care services due t…
Change in maternal income status following stillbirth, neonatal death and severe neonatal morbidity
AIM: We evaluated whether stillbirth, neonatal death or severe neonatal morbidity is associated with a mother’s change in residential neighbourhood income between two consecutive births. METHODS: This population-based cohort included all mothers in Ontario, Ca…
Characteristics and Palliative Care Involvement in Patients Dying in Five UK Emergency Departments: A Retrospective Service Evaluation
Introduction: Approximately 600,000 people die every year in the United Kingdom including 24,000 who die in the Emergency Department (ED). The National Audit of Care at the End of Life looks at the care of dying people during their last hospital admission. How…
Characteristics and Timing of Dual Pediatric Palliative Care and Ethics Consultations
Patients with serious illness hospitalized in the pediatric setting can receive support from Pediatric Palliative Care (PPC) and Ethics Consultation (EC). However, empirical data on dual PPC-EC involvement in pediatrics is limited. Therefore, we characterized …
Checklist of Paediatric Advance Care Planning: A Delphi Study
Aim
To develop a comprehensive decision-making checklist for paediatric advance care planning tailored to the needs of terminally ill children and their families.
Design
A Delphi Study.
Methods
Underpinned by Delphi methodology, a four-phase procedure was ad…
Children's palliative care in Ghana: a situational analysis
Background
There is a growing recognition of the worldwide unmet need for children’s palliative care (CPC) with over 21 million children globally needing access to palliative care. This unmet need means that children are subject to needless suffering and that …
Children’s Palliative Care Knowledge, Attitudes, and Learning Preferences Among Healthcare Professionals Working in Humanitarian Crisis and Emergency Settings
Background:
Palliative care has been recognized as an essential component of a humanitarian response; however, it remains unavailable in most humanitarian crisis settings. Globally, healthcare workforce capacity represents a major barrier to implementing child…
Chronic Cancer-Related Pain in Children: A Narrative Review of Multimodal and Family-Centered Palliative Care Approach
Background: Chronic pain in children with cancer is a major challenge in pediatric palliative care. It results from the interaction of disease-related and treatment-related factors, psychological distress, and the child’s family and social environment. When po…
Cleft lip repair in trisomy 18: ethical considerations for aesthetic surgery in a life-limiting paediatric disease
Trisomy 18 (T18) is a disease with severe congenital anomalies that is typically fatal in the perinatal period or early infancy. This case report describes the care of one child with T18 who survived beyond her initially poor prognosis and whose parents reques…
Clinician experiences of organisational compassion in healthcare: a qualitative study
Background: While compassion is widely recognised as an essential component of high-quality patient care, the compassion needs of clinicians often go unrecognised and unmet. Clinicians face multifaceted sources of workplace suffering, both sources inherent to …
Collaboration of an Obstetrical Residency Program With a Community Hospice/Bereavement Agency to Implement an Obstetrician Specific Educational Curriculum to Improve Care to Bereaved Families and Support Staff During Difficult Delivery Situations
Obstetricians face significant emotional and professional challenges caring for pregnant women experiencing fetal life-limiting diagnoses or fetal demise. Many physicians are uncomfortable offering the emotional support parents need during an unexpected end-of…
Comfort, benefit, and distress: An exploratory study of research experiences of bereaved parents in the neonatal intensive care unit
Background: Understanding the research experiences of bereaved parents is necessary to advance palliative care. Objective(s): To evaluate levels of and factors associated with bereaved parent comfort, benefit, and distress from research participation and to qu…
Communicating cancer diagnoses with children in Japan: A qualitative study of healthcare professionals’ beliefs and approaches in pediatric oncology
Background: Most children with cancer want clear and honest information about their illness, and effective communication can support coping and reduce distress for children and families. However, in Japan, healthcare professionals face numerous communication b…
Communication and Relationships in Pediatric Palliative End-of-Life Decision Making in the United Kingdom and Japan: A Cross-Cultural Scoping Review
Introduction: Decision making in pediatric end-of-life care for children with life-limiting or life-threatening conditions (LLC/LTCs) is ethically complex and shaped by cultural values and health care systems. Although shared decision making has been increasin…
Communication Barriers and Facilitators to Specialist Pediatric Palliative Care Involvement in Pediatric Oncology Settings Across Canada
Objectives: To examine how healthcare provider communication shapes referral, acceptance and ongoing integration of specialist pediatric palliative care (SPPC). Method(s): A qualitative study was conducted across four pediatric cancer centers in Canada. Sixty-…
Community-based pediatric palliative care: a systematic review of structures, processes, and outcomes
Objective
To analyze the structure, processes, and outcomes of different models of community-based palliative care of children, adolescents, and their families reported in the literature.
Methods
The authors conducted a systematic review of original, full-text…
Community-Based Provider Concerns About Pediatric Hospice and Palliative Care
Context: Children and families often rely on community-based hospice and palliative care organizations for care services.
Objectives: The purpose of this study was to explore pediatric-specific concerns of field-based hospice and palliative care clinicians in…
Comparison of early versus late palliative care integration in pediatric onco-critical care: Single-center retrospective study from South India
Background: Children with life-limiting illnesses in onco-critical care often face severe symptoms and complex end-of-life decisions. Early palliative care (PC) may enhance symptom management, quality of life (QOL), and resource utilization. This study aimed t…
Conflicts in Best Interest; Infants with severe neuromuscular disorders presenting to UK Courts
Infants with severe neuromuscular disorders, presenting a birth, are often unable to move, communicate, breathe, and feed. Unlike infants with severe birth asphyxia and cerebral palsy, these neuromuscular conditions are often associated with presumed normal co…
Considering Parental Requests to Withdraw Life-Sustaining Care in Seriously Ill Children: A Case Report and Ethical Analysis
This article describes a case report in which a family’s request for withdrawal of life-sustaining treatment for a child was met with differing ethical opinions in regards to its permissibility. We explore ethical considerations for parental and medical teams’…
Coping as a mediator between family stressors and behavioural adjustment in siblings of children with progressive life-limiting conditions: a multilevel longitudinal study
BACKGROUND: Siblings of children with progressive life-limiting conditions face elevated emotional and behavioural risks. Although multiple family stressors are known, how cumulative stress shapes sibling adjustment is unclear. This study examined how illness-…