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 3001–3025 of 4332 publications
Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. Howe…
Parents: Wish I had done, wish I had not done, and coping after child NICU/PICU death
BACKGROUND AND PURPOSE: An infant or child death is devastating for parents. This study examined parents' wishes regarding what they had or had not done and how they coped 1-13 months and 2-6 years after the infant's/child's neonatal intensive care unit (NICU)…
Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial, Burdensome, or Both for Parents Bereaved by Childhood Cancer?
It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current …
Patients' priorities in a reminiscence and legacy intervention in palliative care
Background: Reminiscence is used in a range of different interventions in palliative care, for example, Dignity Therapy or Life Review. However, literature has focused mainly on the methodology, and little has been published on patients' priorities and primary…
Pediatric Complex Chronic Conditions: Does the Classification System Work for Infants?
BACKGROUND:: One widely accepted approach to identify children with life-limiting health problems is the complex chronic conditions (CCCs) classification system. Although considered the "gold standard" for classifying children with serious illness, little is k…
Pediatric End-of-life Simulation: Preparing the Future Nurse to Care for the Needs of the Child and Family
PURPOSE: Preparing a future nurse to respond to the complex and sensitive needs of a child and family during the end-of-life requires more than didactic content in a classroom. During clinical experiences, students may care for children diagnosed with a termin…
Pediatric Palliative Care in Practice: Perspectives between Acute and Long-term Healthcare Teams
AIM: To explore and compare acute and long-term care professionals' perspectives about pediatric palliative care. METHODS: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-ter…
Pediatric Palliative Care in the Multi-Cultural Context: Findings from a workshop conference
CONTEXT: In our increasingly multicultural society, providing sensitive and respectful pediatric palliative care is vital. OBJECTIVES: We held a one-day workshop conference with stakeholders and pediatric clinicians to identify suggestions for navigating confl…
Pediatric palliative podcasting as a tool to reach families
Podcasts have grown in popularity over the last several years. Pediatric Palliative Care services can use this medium of communication to reach families more effectively. Podcast use is determined by the schedule of parents rather than providers. This abstract…
Pediatric Perioperative DNR Orders: A Case Series in a Children’s Hospital
Context Do-not-resuscitate (DNR) orders are common among children receiving palliative care, who may nevertheless benefit from surgery and other procedures. Although anesthesia, surgery, and pediatric guidelines recommend systematic reconsideration of DNR orde…
Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital
OBJECTIVES: Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHOD(S): Retrospective chart review of all deceased patients at on…
Perceptible end-of-life signs in PICU, a prospective study
Introduction: IFiReaPed study is a prospective ongoing study about perceptible end-of-life signs in Paediatric Intensive Care Unit (PICU). IFiReaPed main hypothesis is that a better information of parents about those perceptible end-of-life signs could help th…
Perception of health professionals about neonatal palliative care
Objective: To identify the perception of health professionals about neonatal palliative care. Method: A phenomenological qualitative study, a non-probabilistic sample, of 15 health professionals from a neonatal intensive care unit in northern Portugal. Content…
Perceptions of a Good Death in Children with Life-Shortening Conditions: An Integrative Review
Background: For children with life-shortening illness, achieving a "good death" can be a tacit goal. There is little understanding of how different stakeholders perceive what a "good death" might be. Objective(s): To review empirical literature to construct an…
Perceptions of Pediatric Palliative Care among Physicians Who Care for Pediatric Patients in South Korea
Background: Despite advances in medical technology, resources for pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. Physicians' awareness of and willingness to provide general palliative care and refer to specializ…
Perceptions on good death among parents of pediatric patients with hematology-oncology disease in advance
Background: It is difficult to perceive the preparation of a good death for children because of its social and cultural issues. Among the children with serious diseases, they can be alienated and the whole processes are done by the decision of the parent's pro…
Perinatal hypoxic-ischaemic encephalopathy: a national survey of end-of-life decisions and palliative care
Objective To explore end-of-life (EoL) decision-making and palliative care in hypoxic-ischaemic encephalopathy (HIE) nationwide.
Methods A cross-sectional national study on moderate-to-severe HIE in newborns ≥35 weeks’ gestational age in 2015, including all 5…
Perinatal Palliative Care: A qualitative study evaluating the perspectives of pregnancy counselors
Background:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%?85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However, structured Per…
Perinatal palliative care education: An integrative review
OBJECTIVES: The aim of this review was to analyze the effectiveness of teaching healthcare professionals in perinatal palliative care, methods of evaluating the teaching, and the teaching strategies used. DESIGN: An integrative review. METHODS: A systematic se…
Physicians' attitudes when faced with life-threatening events in children with severe neurological disabilities
Purpose: Children with severe neurological disabilities are at an increased risk of acute, life-threatening events. We assessed physicians' attitudes when making decisions in these situations.
Physicians' standpoints on end-of-life decisions at the neonatal intensive care units in Jordan
The purpose of this cross-sectional descriptive study is to explore pediatricians' and neonatologists' attitudes and standpoints on end-of-life (EOL) decision-making in neonates. Seventy-five physicians, employed fulltime to care for newborns in 23 hospitals i…
Preferences regarding end-of-life care among adolescents and young adults with cancer: results from a comprehensive multicenter survey in Japan
CONTEXT: Patient preferences influence end-of-life (EOL) care which patients receive. However, preferences regarding EOL care among adolescent and young adult (AYA) cancer population remain unclear. OBJECTIVE(S): The objective of the study was to evaluate pref…
Prevalence and Incidence of Anxiety and Depression among Children, Adolescents, and Young Adults with Life-Limiting Conditions: A Systematic Review and Meta-analysis
IMPORTANCE:
Children, adolescents, and young adults with life-limiting conditions experience various challenges that may make them more vulnerable to mental health problems, such as anxiety and depression. However, the prevalence and incidence of anxiety and d…
Priorities for Nutrition Research in Pediatric Critical Care
BACKGROUND: Widespread variation exists in pediatric critical care nutrition practices, largely because of the scarcity of evidence to guide best practice recommendations. OBJECTIVE: The objective of this paper was to develop a list of topics to be prioritized…
Procedural burden experienced by children with cancer during their terminal hospital admission
Background: Children with chronic conditions, including cancer, have been shown to have high-intensity end-of-life care. We assessed the frequency and timing of invasive procedures that children with cancer undergo during their terminal hospital admission (THA…