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 1276–1300 of 4332 publications
Development of Children's Palliative Care in Perm Krai
Palliative care as a system is presented in Russia for a little over 10 years. Moreover, such care in every region has its own local-specific scheme and infrastructure. This article presents the results the analysis of palliative care state and availability in…
Differences in palliative opportunities across diagnosis groups in children with cancer.
BACKGROUND: Childhood cancer causes significant physical and emotional stress. Patients and families benefit from palliative care (PC) to reduce symptom burden, improve quality of life, and enhance family-centered care. We evaluated palliative opportunities ac…
Disputes over Diagnosing Death: Is It Ethical to Test for Death by Neurologic Criteria over Parental Objection?
The article focuses on unpredictable patients diagnosis with death by neurological criteria (DNC) and mentions harm caused by overriding parent's denial in case of Maddie Reece who died of drowning. Topics discussed include team helped to understand perspectiv…
Diversity of Parent Emotions and Physician Responses During End-of-Life Conversations
BACKGROUND AND OBJECTIVES: To provide support to parents of critically ill children, it is important that physicians adequately respond to parents' emotions. In this study, we investigated emotions expressed by parents, physicians' responses to these expressio…
Doctors' experiences of referring and admitting patients to the intensive care unit: a qualitative study of doctors' practices at two tertiary hospitals in Malawi
OBJECTIVE: To explore doctors' experiences of referring and admitting patients to the intensive care unit (ICU) at two tertiary hospitals in Malawi. DESIGN: This was a qualitative study that used face-to-face interviews. The interviews were audiotaped and tran…
Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox's Bazar, Bangladesh
INTRODUCTION: The Médecins Sans Frontières (MSF) Goyalmara Hospital in Cox's Bazar, Bangladesh is a referral centre offering the highest level of care available in the Rohingya camps for pediatrics and neonatology. Efforts are underway to integrate pediatric p…
Do We Need Palliative Care in Pediatric Nephrology? Patients’ and Caregivers’ Disease Experience
Abstract
Chronic life-limiting illnesses such as chronic kidney disease (CKD) require integral support to the families concerned in addition to medical care. Palliative care is an option to facilitate families to address future concerns, such as procedures for…
Dying and Death in a Pediatric Cardiac ICU: Mixed Methods Evaluation of Multidisciplinary Staff Responses
OBJECTIVES: Understanding factors influencing quality of pediatric end-of-life (EOL) care is necessary to identify interventions to improve family and staff experiences. We characterized pediatric cardiac ICU (PCICU) staff free-text survey responses to context…
Early Bereavement Psychosocial Outcomes in Parents of Children Who Died of Cancer With a Focus on Social Functioning
PURPOSE:The early grief experience of parents of children who died of cancer remains understudied. Understanding psychosocial symptomology and functioning of parents early in their bereavement is essential to developing supportive interventions aimed at offset…
Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks…
Education and Mentoring of Specialist Pediatric Palliative Care Medical and Nursing Trainees: The Quality of Care Collaborative Australia
BACKGROUND: The Quality of Care Collaborative Australia (QuoCCA) builds capability in the generalist and specialist paediatric palliative care (PPC) workforce throughout Australia. It supports regional and community services to provide care close to families' …
Effects of COVID-19 on Pediatric Cancer Care: A Multicenter Study of 11 Middle Eastern Countries
During the COVID-19 pandemic, major challenges are facing pediatric cancer centers regarding access to cancer centers, continuity of the anti-cancer therapy, hospital admission, and infection protection precautions. Pediatric oncologists actively treating chil…
Embracing paediatric palliative care in paediatric oncology from diagnosis onwards
Paediatric palliative care aims to support children and young people with life-limiting or life-threatening conditions, and their families, from the time of diagnosis. Early integration within oncology has been recognised as having benefits for all involved, w…
Empathy Expression in Interpreted and Noninterpreted Care Conferences of Seriously Ill Children
BACKGROUND AND OBJECTIVES: Clinician empathy is associated with improved
Employment and leave while parenting children with medical complexity.
INTRODUCTION: Children with medical complexity (CMC) require frequent medical care and are at risk of recurrent hospitalizations. The Family Medical Leave Act (FMLA) allows some workers to take unpaid leave from work to care for family members. This study exam…
Enabling flourishing: novel approaches in palliative medicine for children with advanced kidney disease
Purpose Of Review: Paediatric kidney disease results in considerable burden on children and their families. Paediatric palliative care is a holistic, family-centred care approach intended to enable flourishing and address the many impediments to life participa…
End-of-life care in Brazilian Pediatric Intensive Care Units
OBJECTIVE: Most deaths in Pediatric Intensive Care Units involve forgoing life-sustaining treatment. Such deaths required carefully planned end-of-life care built on compassion and focused on palliative care measures. This study aims to assess topics related t…
End-of-life care in Brazilian pediatric intensive care units: challenges and opportunities
Pediatric Critical Care Medicine has evolved drastically as a specialty since its inception more than five decades ago.1 Advances in technology and medical interventions have led to a substantial reduction in mortality rates, which are now in the single digits…
End-of-life care in neonatal intensive care units in Iberoamerica: A look from the nursing perspective
Introduction: End-of-life care (ELC) represents a quality milestone in neonatal intensive care units (NICU). The objective of this study was to explore how ELC are carried out in NICUs in Iberoamerica.
Methods: Cross-sectional study, through the administratio…
End of life care in the setting of extreme prematurity - practical challenges and ethical controversies
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely preterm inf…
End of Life in Pediatrics: The "Relief" of Poetry on Pain by Reaching Children's Spirituality
This article provides a brief overview on the role of poetry into the pediatric palliative and end-of-life care setting. Starting from examples, the author deepens possible applications to the world of children and offers a poem, from his direct experience, wh…
End-of-Life transfusion support at hospice and pediatric oncology unit: Bridging the gap between benefits and therapeutic alliance
OBJECTIVES: Although transfusion support is commonly used in oncological palliative care, there is still a paucity of literature. We examined the transfusion support provided in the terminal stage of the disease and compared the approach at a pediatric oncolog…
Enhanced symptom management clinicparental evaluation. Does it help?
Objectives Questionnaire evaluation of a newly developed Enhanced Symptom Management clinic held at the local children's hospice to support children and young people (CYP) with life limiting (LLC) and life threatening conditions (LTC). Methods A paper question…
Enhancing Expert Panel Discussions in Pediatric Palliative Care: Innovative Scenario Development and Summarization With ChatGPT-4
This study presents a novel approach to enhance expert panel discussions in a medical conference through the use of ChatGPT-4 (Generative Pre-trained Transformer version 4), a recently launched powerful artificial intelligence (AI) language model. We report on…
Epidermolysis Bullosa in Pediatric Palliative Care: A Case Series
Background: Epidermolysis bullosa (EB) comprises a group of rare genetic conditions that are characterized by fragility of the skin and mucous membranes and formation of blisters with minor trauma. Severe forms can be life limiting. The palliative care needs o…