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 3651–3675 of 4332 publications
Measuring the Effects of an Animal-Assisted Intervention for Pediatric Oncology Patients and Their Parents: A Multisite Randomized Controlled Trial
OBJECTIVE: This multicenter, parallel-group, randomized trial examined the effects of an animal-assisted intervention on the stress, anxiety, and health-related quality of life for children diagnosed with cancer and their parents. METHOD: Newly diagnosed patie…
Missing life stories. The narratives of palliative patients, parents and physicians in paediatric oncology
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-g…
Moral distress in PICU and neonatal ICU practitioners: A cross-sectional evaluation
Objectives: To measure the level of moral distress in PICU and neonatal ICU health practitioners, and to describe the relationship of moral distress with demographic factors, burnout, and uncertainty. Design: Cross-sectional survey. Setting: A large pediatric …
Moving toward a shared process: The impact of parent experiences on perinatal palliative care
Perinatal palliative care programs seek to support parents expecting a baby diagnosed with a serious medical condition. Clinicians have increasingly recognized the importance of parental perspectives on the medical care mothers and their fetuses and live-born …
Multimodal pediatric pain management (part 2)
Dr Stefan Friedrichsdorf speaks to Commissioning Editor Jade Parker: Stefan Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children's Hospitals and Clinics of Minnesota in Minneapolis/St …
Multiple Complex Chronic Conditions and Pediatric Hospice Utilization among California Medicaid Beneficiaries, 2007-2010
Background: Over 42,000 children die each year in the United States, including many with multiple complex chronic conditions (MCCCs), but little is known about whether the presence of MCCCs influences families to utilize pediatric hospice care. Objective: The …
Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU
BACKGROUND: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives. PURPOSE: To compare retrospective parent r…
Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed the initi…
Neonatal palliative care
PURPOSE OF REVIEW: A significant number of newborns are affected by life-limiting or life-threatening conditions. When prolongation of survival is no longer a goal, or prognosis is uncertain, a plan of care focused on the infant's comfort is essential. The aim…
Neonatologist training in communication and palliative care
Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. Whil…
Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness, epilepsy, hallu…
Neurological palliative care in children
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 k…
Neuropathic pain in palliative care patients
Each year, an estimated 40 million people are need of palliative care(PC). 78% of whom live in low- and middle-income countries. For children, 98% of those needing palliative care in-low and-middle income countries (1). Although, number of the patients who are…
Newborn Care Curriculum: Palliative Care for the Newborn
Introduction: Because pediatric hospitalists have increasing responsibilities in newborn hospitalization, training in perinatal palliative care is beneficial. A 2015 needs assessment revealed 68% of surveyed pediatric hospitalists were interested in more educa…
Non-pharmacological interventions for management of fatigue among children with cancer: systematic review of existing practices and their effectiveness
OBJECTIVES: Fatigue is common among children living with cancer, particularly in advance stages. Little is known about the effectiveness of non-pharmacological approaches to manage this complex and distressing symptom among children. Thus, the present paper ai…
‘No second chance’ – Junior neonatal nurses experiences of caring for an infant at the end-of-life and their family
Death of an infant is acutely stressful for parents and professionals. Little is known about junior nurses' experiences providing end-of-life care in Neonatal units (NNU). This study aimed to better understand junior nurses' experiences providing end-of-life c…
Nursing Unit Environment Associated with Provision of Language Services in Pediatric Hospices
BACKGROUND: Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use correspo…
Paediatric advance care planning: Physician experience and education in initiating difficult discussions
AIM: Our study aimed to assess physicians' experiences and education regarding advance care planning (ACP) in paediatrics. We aimed to assess barriers to ACP initiation, including the adequacy of exposure and education regarding ACP and whether practitioners w…