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 3826–3850 of 4332 publications
Training pediatric fellows in palliative care: A comparison of simulation-based training and didactic education
Background: Although palliative care (PC) communication skills can be learned through trial and error, pediatric fellows have few opportunities to practice communication, and learning by doing may be harmful for families. Despite these issues and recommendatio…
Training Pediatric Fellows in Palliative Care: A Pilot Comparison of Simulation Training and Didactic Education
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills.
OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (…
Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature
BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for both youn…
Translating Research to Practice: Providing Critically Ill Children the Opportunity to Go Home or to Hospice for End-of-Life Care
BACKGROUND: A freestanding quaternary pediatric hospital in New England has been facilitating parents' requests to take their child home or to a hospice facility from an Intensive Care Unit at end of life for the withdrawal of life sustaining measures for the …
Trend analysis of mortality rates and causes of death in children under 5 years old in Beijing, China from 1992 to 2015 and forecast of mortality into the future: an entire population-based epidemiological study
OBJECTIVES: To analyse trends in mortality and causes of death among children aged under 5 years in Beijing, China between 1992 and 2015 and to forecast under-5 mortality rates (U5MRs) for the period 2016-2020. METHODS: An entire population-based epidemiologic…
Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and…
Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987-2011: a population-based study
Background: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from c…
Trends in Hospital Utilization and Costs among Pediatric Palliative Care Recipients
OBJECTIVE AND BACKGROUND: Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center. METHODS: This is a retrospective cohort study of 109 patients >/=2 year…
Truth telling in the setting of cultural differences and incurable pediatric illness: A review
Importance Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect indiv…
Tumor Talk and Child-Well Being: Perceptions of "good" and "bad" news among parents of children with advanced cancer
CONTEXT: Little is known about how parents of children with advanced cancer classify news they receive about their child's medical condition. OBJECTIVE: To develop concepts of "good news" and "bad news" in discussions of advanced childhood cancer from parent p…
Two Futures: Financial and Practical Realities for Parents of Living With a Life Limited Child
Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and with their f…
Understanding How Bereaved Parents Cope With Their Grief to Inform the Services Provided to Them
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up…
Upholding Ethical Decision Making in Children With Life Limiting Illnesses
Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.
Use of spiritual coping strategies by gender, race/ethnicity, and religion at 1 and 3 months after infant's/child's intensive care unit death
BACKGROUND AND PURPOSE: In the United States, 57,000 children (newborn to 18 years) die annually. Bereaved parents may rely on religious or spiritual beliefs in their grief. The study's purpose was to examine differences in parents' use of spiritual and religi…
Utilization of palliative care in pediatric oncology: An interprofessional evaluation of knowledge, beliefs, perceived barriers, and involvement of services
Background: The care of pediatric patients with cancer and their families is complex and evolving. Despite significant advances in outcomes, symptoms of disease and complications of therapy continue to cause pain and other symptoms that could be improvedwith t…
"We Hardly Ever Talk about It": Emotional Responsive Attunement in Couples after a Child's Death
Within Western cultural traditions, the idea that parents should talk about the death of their child with each other is deeply rooted. However, across bereaved parent couples there are wide variations in communication about their grief with each other. In this…
"We just follow the patients' lead": Healthcare professional perspectives on the involvement of teenagers with cancer in decision making
PURPOSE: We report on an in-depth interview and participant observation study that uses data from multiple sources to determine how the involvement of teenagers with leukaemia is understood and enacted in healthcare. In this article, we investigate healthcare …
What do transplant physicians think about palliative care? A national survey study
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these …
What do you mean I am not going to survive my cancer? Helping adolescents and young adults confront mortality
Confronting cancer-related mortality during the adolescent and young adult (AYA) phase of life is enormously challenging. Developmentally appropriate, high-quality psychosocial care includes assessing understanding of prognosis, preferences for treatment, soci…
What if the baby doesn't survive? Health-care decision making for ill newborns in Ethiopia
Despite efforts to improve access to and quality of care for newborns, the first month after birth remains the most dangerous period of life. Given high neonatal mortality in low-income countries, saving newborn lives is a key priority for global and national …
Who tells a mother her baby has died? Communication and staff presence during stillbirth delivery and early infant death
OBJECTIVE: Perinatal loss (stillbirth or early infant death) is often a sudden, unexpected event for families. We evaluated who communicates the loss to the parents and who is there for support at the delivery or death. STUDY DESIGN: We conducted a mail survey…
Withdrawal of artificial nutrition and hydration in neonatal intensive care: parents' and healthcare practitioners' views
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the stakeholders' exp…