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 601–625 of 4332 publications
Outcomes of delivery in patients with diagnosed life-limiting fetal condition and evaluation of perinatal palliative care program: a retrospective review of palliative care service over 7 years
Background: The parents with a diagnosis of life-limiting fetal condition should receive medical information about the nature of defect, prognosis, possibilities of care and obstetric complications and receive psychological, spiritual, legal support. In our mo…
Outcomes used to measure the clinical application of neonatal palliative and/or end-of-life care in neonatal settings: A systematic review
Objectives: Standardised reporting of outcomes in neonatal palliative and/or end-of-life care would facilitate comparison of practice and lead to more informed decisions about practice. We systematically reviewed evidence evaluating outcomes currently used to …
PACOPED QL: Development and evaluation of the quality-of-life scale for children with life-Threatening illnesses
Objectives This study aims to validate the Palliative and Complex Chronic Pediatric Patients QoL Inventory (PACOPED QL), a new quality-of-life (QoL) assessment tool for pediatric palliative patients with complex chronic conditions. The goal is to create a comp…
Paediatric Palliative Care following Hospital discharge: Prevalence and factors associated with non-continuity of palliative care for children with cancer in Busoga sub-region-eastern Uganda; A mixed methods study
Background Palliative care (PC) is crucial for children with cancer to alleviate suffering and enhance quality of life. However, continuity of pediatric palliative care (PPC) can be disrupted by factors such as lack of knowledge, stigma, bureaucratic hurdles, …
Paediatric palliative care medical hotline: Retrospective database study
Background: Clinical emergencies may occur at any time in paediatric palliative care (PPC). Our PPC team offers an on-call 24 hours a day, 7 days a week medical hotline assistance (MHLA). We report the experience of our MHLA during 2021, focusing on phone call…
Pain as an Adverse Event During Chemotherapy in Children with Acute Lymphoblastic Leukemia: A Cross-Sectional Nationwide Study
IntroductionPain is a common adverse event of chemotherapy in pediatric oncology patients. Understanding pain's impact on these patients is essential for improving their quality of life and treatment outcomes. This short communication aims to describe the char…
Palineo score: development of a score to identify the palliative care needs of neonatal patients admitted to the neonatal intensive care unit
Objective:
To develop a score (Palineo score) to identify the palliative care needs of newborn patients admitted to a Brazilian neonatal intensive care unit of a tertiary maternity hospital that serves as a reference center for high-risk pregnancies, ensuring …
Palliative and End-of-Life Disparities for Pediatric Hispanic, Spanish-Preferring Patients With Cancer
The influence of ethnicity and language preference on palliative and end-of-life (EOL) experiences in children with cancer is poorly understood. Existing data relies on adult studies and suggests that patients from underserved populations often receive inferio…
Palliative Care Communication Training in Pediatric Fellows: A Three-Year Simulation Education Intervention
Objective Palliative care (PC) communication skills are essential to patient care, yet many pediatric fellows do not receive formal PC education. Where it exists, current training often relies on lecture and observation. Simulation-based training is an effecti…
Palliative Care Education in Pediatric Cardiology Fellowships: A Survey of Program Directors
With advances in treatment options for severe congenital heart disease, there is a growing population of children and adults living with advanced heart disease, many of whom experience significant long-term comorbidities and uncertain disease trajectories. Alt…
Palliative Care for Children and Adolescents with Non-curative Brain Tumors: A Scoping Review
Children with non-curative brain tumors have a predictable and burdensome neurological decline. Care provision for these children falls in the gap where the acute inpatient services intersect with community-based providers. These children commonly receive care…
Palliative care in pediatric Leukemia: The value added to care
Childhood leukemias are one of the most curable cancers, because of revolutionary developments in the field of pediatric oncology. The diagnosis of leukemia in a child impacts the whole family, with disruption in their routines, behavior, attitudes and relatio…
Palliative care interventions used by village health volunteers in Thailand
Background:
Palliative care (PC) is described by the World Health Organization (WHO) as an interprofessional approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatenin…
Palliative Care Involvement and End-of-Life Care Intensity Among Adolescents and Young Adults with Nonmalignant Illnesses: A Population-Based Cohort Study in Ontario, Canada
Background: Adolescents and young adults (AYAs) with life-limiting
Palliative Care Needs in Pediatric Hematologic Oncology: Parent–Child Perspectives Across Stages
Context Children with hematologic malignancies undergo prolonged, intensive therapy that imposes physical, psychological, social, and spiritual challenges on patients and families. Although early palliative care is recommended, little is known about how these …
Palliative care training programmes for community volunteers working with children and their families: a scoping review
Introduction: Volunteers play a significant role in enhancing the quality of palliative care. Training is necessary to deliver voluntary community care that assists healthcare professionals, benefits families and eradicates inequities for underserved populatio…
Palliative Sedation in Pediatric Patients
Palliative sedation is the procedure by which the level of awareness of patients is lowered through different drugs in order to avoid suffering caused by refractory symptoms, usually terminal illnesses. In Spain in the year 2021 died more than 14 35 children f…
Parental Authority and the Weight of Assent: Navigating Moral Dilemmas in Adolescent End of Life Care
Though the idea of assent emerged in the 1980s and adaptation in paediatrics has become more common practice, adolescent end-of-life care adds a multi-faceted layer of increased complexity to the assent process. In the current era of moral pluralism, medical d…
Parental autonomy and children's health: a patriarchal dilemma in the Middle East, with particular emphasis on Kuwait
In 2020, Kuwaiti mothers won legal medical guardianship over their children, enabling them to authorize medical treatment, this despite still not having autonomy for their own medical care, yet being vicariously liable for potential tort caused by their child.…
Parental experiences of end-of-life decision making in Neonatal Intensive Care Unit: A systematic review and qualitative data synthesis
Objective: This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU).
Methods: We searched nine databases up to December 2023, including qualitative studies focuse…
Parental Financial Support Needs After the Death of a Child From Cancer
Pediatric cancer treatment and child death impose significant financial strain on families-yet we do not know which financial supports are needed. We sought to assess this through a survey conducted 4-5 years following a child's death. Parents rated the useful…
Parental Goals of Care for Children With Rare Diseases: A Content Analysis of Pediatric Advance Care Planning Conversations
IntroductionCaregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child's disease. This diverse population may share common goals related to their chi…
Parenting Process in Paediatric Palliative Care for Children With Cancer During Hospitalisation at Home: A Qualitative Study of the Maternal Experience
Background
Paediatric palliative care (PPC) addresses the unmet needs of children with life-limiting conditions and their families. In France, PPC for children with cancer is regularly offered in hospital or the home setting, with families often stating a pref…
Parent Perceptions of Appearance in Seriously Ill Infants in the Neonatal Intensive Care Unit
Background: Parents of infants admitted to the neonatal intensive care unit (NICU) are often overwhelmed with distress. Infant appearance contributes to parent distress, but the meaning parents assign to their observations remains unclear. Objective: This stud…
Parents' and nurses' experiences of end-of-life care in intensive care for children: A systematic review
Background: The provision of end-of-life care for children in intensive care is a stressful and traumatic event for parents with immediate and life-long impacts. End-of-life care for children is also challenging for critical care nurses who must balance the ch…