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 3676–3700 of 4332 publications
Paediatric palliative care and intellectual disability-A unique context
BACKGROUND: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. METHOD: This study de…
Paediatric palliative care in the Asia Pacific region: where are we now?
Paediatric palliative care services have increased both in numbers and capacity around the world in response to the needs of children living with life-limiting conditions. Members of the Asia Pacific Hospice Network, who render care to children, have increasin…
Pain reporting and analgesia management in 270 children with a progressive neurologic, metabolic or chromosomally based condition with impairment of the central nervous system: cross-sectional, baseline results from an observational, longitudinal study
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differen…
Palliative care after neonatal intensive care: Contributions of Leonetti Law and remaining challenges
The 2005 enactment of the "Patients' rights and end-of-life care" act, known as the Leonetti law, has been accompanied by practical changes in the processes of withdrawal and withholding of active life-sustaining treatments. This law has also promoted the impl…
Palliative care and quality of life in neuro-oncology: The experience at the meyer children's hospital
INTRODUCTION: In order to allow the young patient with CNS tumor to experience a peaceful death, specific palliative interventions are required for the control of pain, loss of consciousness, cognitive disturbances, communication and motor function deficits. T…
Palliative care approaches to neonates with chronic respiratory failure
Neonates with chronic respiratory failure have uncertain prognosis and can face significant treatment burden. As the trajectory of the illness becomes more concerning, consultation with a pediatric palliative service should be considered, especially as therape…
Palliative care for children with a yet undiagnosed syndrome
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, …
Palliative care in children with spinal muscular atrophy type 1: How do they die? Results from a French multicentric study (National Hospital clinical Research Program)
Objective: The national Hospital Clinical Research Program (PHRC) called Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA 1) was conducted to depict palliative practices in that fatal disease, in which de…
Palliative care in neonatal period and ethical issues
Perinatal palliative care is the active total care of the fetus who has been diagnosed with a life-limiting condition with his/her entirety and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether…
Palliative care in neonatology: French neonatologists' practice
Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and their pra…
Palliative Care in Undergraduate Medical Education—How Far Have We Come?
Purpose: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching…
Palliative Care Involvement Is Associated with Less Intensive End-of-Life Care in Adolescent and Young Adult Oncology Patients
BACKGROUND: Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL). OBJECTIVE: This study aimed to describe the characteristics of AYAO patients aged 15-26 years who…
Palliative communication skills training for pediatric nurse practitioners: A novel program with booster sessions
Communication between pediatric providers, patients, and their families is a key component of for children with serious illness, with broad implications for patient and family outcomes. Recommendations for effective and compassionate palliative communication i…
Palliative medicines for children – a new frontier in paediatric research
Objectives
This paper seeks to highlight from a UK perspective the current lack of a research evidence base in paediatric palliative care that has resulted in a paucity of available medicines with appropriate formulations (strength and dosage form) to provide …
Palliative radiation therapy for pediatric patients: Parental perceptions
Purpose/Objective(s): Palliative radiation therapy (pRT) for pediatric cancer patients is often used to treat pain, neurologic symptoms, and other conditions from progressive cancer that affects quality of life. However, though the doses used are generally low…
Palliative Sedation With Propofol for an Adolescent With a DNR Order
Death from cancer is often painful. Usually, the pain can be relieved in ways that allow patients to remain awake and alert until the end. Sometimes, however, the only way to relieve pain is to sedate patients until they are unconscious. This method has been c…
Parental Bereavement: Looking beyond Grief
Bereaved parents have higher morbidity and mortality rates when compared to non-bereaved parents. While parental grief is well studied, the complexities of challenges bereaved parents face are not understood. This study describes parental bereavement challenge…
Parental Concordance Regarding Problems and Hopes for Seriously Ill Children: A Two-Year Cohort Study
CONTEXT: Parents of a seriously ill child may have different concerns and hopes for their child, and these concerns and hopes may change over time. OBJECTIVES: In a mixed-method prospective cohort of parental dyads of children with serious illness, to describe…