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 3326–3350 of 4332 publications
Neonatal mortality and associated factors in newborn infants admitted to a Neonatal Care Unit
INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal mortality and asso…
Neonatal palliative care: a practical checklist approach
OBJECTIVES: Following publication of detailed national neonatal palliative care guidance, practical regional guidance, in the form of multidisciplinary 'checklists', was implemented aiming to improve the quality of neonatal palliative care. METHODS: Case note …
Neonatal Palliative Care in the United States Deep South: Exploration of Patterns of Care and Health Disparities
Background: In 2013, 23,446 infants died in the U.S.. For infants hospitalized in the neonatal intensive care unit (NICU), advances in medicine have prolonged the lives of many infants who would not have previously survived, resulting in complex clinical scena…
Neurodevelopmental Outcomes of Infants Born at <29 Weeks of Gestation Admitted to Canadian Neonatal Intensive Care Units Based on Location of Birth
OBJECTIVE: To compare mortality and neurodevelopmental outcomes of outborn and inborn preterm infants born at <29 weeks of gestation admitted to Canadian neonatal intensive care units (NICUs). STUDY DESIGN: Data were obtained from the Canadian Neonatal Network…
Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population
BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of screening tests to…
Nurses' Experiences of End-of-life Photography in NICU Bereavement Support
PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected through a focu…
Nurturing Futility in the NICU: The Dutch Perspective
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opport…
Opinions of Israeli neonatologists about life and death decisions in neonates
Background:: In 2005, the Israeli parliament passed the "law of dying patients" legalizing life and death decisions (do not resuscitate) in patients with life expectancy less than 6 months. Objective:: To determine whether ethnic and religious backgrounds (bot…
Opioid treatment for mixed pain in pediatric patients assisted by the Palliative Care team. Five years of experience
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is moderate to sever…
Outcome measurement in paediatric palliative care: lessons from the past and future developments
BACKGROUND: The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust e…
Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study
Aim To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none. Method Retrospective c…
Outpatient appointment non‐attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study
Aim
To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none.
Method
Retrospective c…
P-75 ‘cold bedrooms, cooling blankets, and cuddle cots’ provided by children’s hospices: mapping practice
Background The ways parents are supported at the end of their child’s life and after death can profoundly affect the grieving process. Within children’s hospices cold bedrooms, cooling blankets and cuddle cots are provided to enable families to be close and ha…
Paediatricians' expectations and perspectives regarding genetic testing for children with developmental disorders
AIM: To investigate paediatricians' expectations and perspectives of genetic testing for children with developmental disorders. METHODS: Paediatricians working in a developmental clinic were surveyed each time they ordered a chromosomal microarray (CMA) for a …
Paediatric palliative care: Are we doing enough? a retrospective review of deaths over 5 years in an academic tertiary hospital paediatric intensive care unit
Aims & Objectives: To study the epidemiology of deaths in our paediatric intensive care unit (PICU) over 5 years, so that we can better understand the dying experience of these patients and improve on palliative care for patients with life-limiting illnesses. …
Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-rel…
Pain Management in the Pediatric Palliative Care Population
PURPOSE: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. METHODS: The literature was searche…
Palliative care in an underserved community: Striving and thriving
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting …
Palliative care in a tertiary neonatal intensive care unit: a 10-year review
OBJECTIVES: When active treatment is no longer in the best interests of the patient, redirection of care to palliation is an important transition. We review, within a tertiary neonatal intensive care unit (NICU), the journey leading to the decision to redirect…
Palliative care initiation in pediatric oncology patients: A systematic review
Palliative care (PC) aims to improve quality of life for patients and their families. The World Health Organization and American Academy of Pediatrics recommend that PC starts at diagnosis for children with cancer. This systematic review describes studies that…
Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records
Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cance…
Palliative Care: Opportunities for Nursing
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and …
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in south east London: A preliminary study
OBJECTIVES: Several barriers have been identified as preventing or delaying accessing to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. ME…