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 576–600 of 4332 publications
Measuring a Patient Reported Outcome: A Pediatric Palliative Care Nationwide QI Collaborative
Introduction: Pediatric palliative care (PPC) aims to enhance the quality of life of children and families facing serious illness. Subsequently, patient reported outcomes (PRO) are crucial; however, development of valid, useful tools for our field has faced se…
Measuring the Level of Confidence and Identifying Gaps in Providing Palliative Care Services to Children by the Adult Palliative Care Team in the Kingdom of Saudi Arabia
Objectives: The field of pediatric palliative care (PPC) has grown in the last few years because of increased awareness of the unique requirements of children at the terminal stage. In this study, we aimed to analyze the willingness and confidence of adult pal…
Mediating religious disputes about children's medical treatment: a qualitative study
Background Mediation is a process which allows conflicting parties to come together with the support of a mediator to try and find an agreed way forward. Mediation has been increasingly used in paediatric medical treatment disputes, but there is little empiric…
Medicaid‑Insured Children with Medical Complexity in a Rural State
Objective: To describe children with medical complexity (CMC) in Montana according to their clinical characteristics, rurality, and distance from specialty care, and to assess for disparities in geographic access to specialty care for American Indian children.…
Meeting the emotional and behavioral health needs of bereaved NICU parents
Parents who experience the death of a child in the neonatal intensive care unit (NICU) are at high risk for adverse behavioral health outcomes. For many parents, their child may have never lived outside of the hospital and the grief and loss this subset of ber…
Memory-making interventions for children with life-threatening or life-limiting conditions and their families: A systematic review of evidence and implications for practice
Background: Emotional and psychosocial support is vital for children with life-limiting or life-threatening conditions and their families. Memory-making interventions, which create lasting memories, are gaining recognition, yet a comprehensive synthesis of the…
Mending the gaps: A systems-focused rapid review on paediatric palliative care for health leaders
In Canada, the provision of Paediatric Palliative Care (PPC) services faces unique barriers due to a large geography and dispersed service population. This review identifies global challenges and strategies to inform efforts in strengthening Canadian PPC acces…
Micronutrient Deficiencies and Their Impact on Hospitalization Duration in Pediatric Palliative Care: A Retrospective Cohort Study
OBJECTIVE: To evaluate the frequency of micronutrient deficiencies and assess their association with the duration of hospital stay in pediatric palliative care (PPC) patients. MATERIALS AND METHODS: This retrospective study analyzed 81 children hospitalized in…
Midwifery manager's experiences of knowledge and skills utilization by midwife specialists in the public health sector of South Africa
Introduction: Midwife specialists are trained professionals who render low and high-risk maternity and neonatal healthcare services across the globe. A workforce shortage of trained obstetricians and neonatologists in the rural parts of South Africa led to the…
Migrant Families’ Experiences in Pediatric Oncology: A Scoping Review
Purpose
Pediatric cancer affects the entire family unit and mandates specific decision-making considerations for providers due to the unique triadic decision-making constellation, which is further complicated by migration experience. However, no research synth…
Moral Distress in Pediatric Palliative Care: A Cross-Sectional Study with Brazilian Professionals
IntroductionHealthcare professionals caring for children with life-threatening illnesses face frequent bioethical conflicts, often leading to moral distress. In pediatric palliative care (PPC), this can compromise both professional well-being and quality of ca…
Most costly and prevalent reasons for hospitalization in children with medical complexity in Ontario, Canada
BACKGROUND AND OBJECTIVES: Children with medical complexity (CMC) have chronic health conditions often associated with functional limitations. CMC comprise 1%-5% of the pediatric population. In Canada, their care accounts for one-third of pediatric health spen…
Mothers Who Accompany a Child to Their Death: Starting Again Without Ever Forgetting
Abstract
Background/Objectives: Parents who accompany their children with a complex chronic illness until their death experience a unique situation, with vulnerabilities, specific needs and enormous suffering. The aim of the study was to describe the lived exp…
Multiomics profiling and parenteral nutrition weaning in pediatric patients with intestinal failure: A longitudinal cohort study
Background: Intestinal failure (IF) is a life-limiting condition that includes a variety of intestinal pathologies. Currently, there are few clinical biomarkers that reflect intestinal function or a patient's potential to wean off parenteral nutrition (PN), ma…
Multi-stakeholder perspectives into the experiences of siblings when a child is critically ill: A qualitative systematic review
Objectives: A child's critical illness and admission to intensive care can have significant short- and long-term impacts for the parents and hospitalized child. While experiences of parents have been explored, the impact on siblings remains unclear. The aim wa…
Narrative Diaries in Paediatric Palliative Care: A Scoping Review
Aim: The aim of the study was to offer a comprehensive overview about literature on narrative diaries in paediatric palliative care.
Methods: A scoping review was conducted in accordance with the methods of Arksey and O'Malley.
Results: Among 83 studies, nin…
Navigating Cultural and Religious Differences in Communication with Neurologically Ill Children Requiring Palliative Care
Abstract: Pediatric palliative care (PPC) aims to enhance the quality of life for children with lifelimiting conditions and their families through individualized, interdisciplinary support. Among this
population, children with neurological diseases represent a…
Navigating Time-Critical Decisions in Pediatric Critical Care: A Proactive Communication Guide for Cultivating Prognostic Awareness
Background: Clinical teams face many barriers to communicating with the parents/caregivers of patients experiencing an acute decline. Outside of these time-critical situations, clinicians often can iteratively assess and cultivate prognostic awareness of the p…
Needs, status and future directions in palliative care for children with cancer: an insight into the Italian situation
Pediatric palliative care (PPC) is an essential component of holistic care for children with cancer, addressing the physical, emotional, psychosocial and existential needs of children and their families. This narrative review explores the status, challenges, a…
Neonatal and paediatric palliative care interdisciplinary education in India
Background: Newborns and children with chronic and life-limiting illnesses and their families benefit from family-centered interdisciplinary palliative care, PC). The value of PC for patients and their families, coupled with health inequities, especially in lo…
Neuropalliative Medicine in Pediatric Neurology
Objective: This article characterizes the unique aspects of neuropalliative care related to helping children with serious illness and their families live well in the face of health fragility and disability that may extend over years or even decades. Shared dec…
Neurosurgical management for chronic and end-of-life pain in children: A systematic review
Introduction: Chronic and end-of-life pain in children is underreported and undermanaged. Current guidelines for pediatric chronic pain include medical and interventional modalities; however, the inclusion of neurosurgical treatments is uncommon and inconsiste…
Nurses' Lived Experiences Following End-of-Life Care: A Hermeneutic Study from a North Central State, Nigeria
Background: Death is a common occurrence in nursing practice, and nurses are expected to provide professional and sensitive care to families, which can be psychologically demanding. However, there is a paucity of studies describing the experiences of nurses de…
Nurturing compassion in neonatal end-of-life care: a qualitative exploration of palliative care nurses' roles and experiences
Background: Compassion is central to neonatal end-of-life care, ensuring comfort and dignity for neonates with life-limiting conditions and their families. However, the emotional and ethical challenges faced by neonatal palliative care nurses, particularly in …
One Meeting, Three Perspectives
In this narrative medicine essay, a mother, a palliative care physician, and a hospital chaplain describe a meeting discussing a young patient’s medical options for treating his rare brain tumor.