For many patients, the preferred place of death is shifting from the hospital to home. Furthermore, home extubation is becoming more common place fore pediatric patients but still remains rare in the context of all withdraws of life-sustaining…
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…
Objective: To report a finding of a severe lack of social support with potential for serious harm during the course of a pediatric advanced care planning study. Method: A longitudinal, single-blinded, multisite randomized controlled trial, conducted…
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…
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).…
Individuals with Rett syndrome (RTT) can have variable manifestations of stereotypies. In this nation-wide cross-sectional study, we recruited all individuals with RTT in Taiwan diagnosed as RTT by neurologists based on genetic findings and…
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…
Simulation has been shown to improve the preparedness of practitioners in acute care. In this review we evaluate using simulation to prepare practitioners to deliver palliative care in multidisciplinary teams. The Joanna Briggs Institute approach was…
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to…
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…
Background: Pelvic symptoms are distressing symptoms experienced by patients with Friedreich's Ataxia (FRDA). The aim of this study was to describe the prevalence of lower urinary tract symptoms (LUTS), bowel and sexual symptoms in FRDA.Methods:…
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.
Ana Todorovic's baby, Nadia, died just before birth. Ana says she received excellent care and was told when 37 weeks pregnant that Nadia was not going to survive for long.
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…
Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life…
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…
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…
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…
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…
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,…
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…
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…
BACKGROUND: Parents who experience a perinatal loss often leave the hospital with empty arms and no tangible mementos to validate the parenting experience. Opportunities to create parenting experiences with transitional objects exist following the…
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…
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…
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…
In order to gain more insight on the influence of ethnic diversity in paediatric cancer care, the perspectives of care providers were explored. Semi-structured interviews were conducted among 12 paediatric oncologists and 13 nurses of two different…
OBJECTIVES: To evaluate for any association between time of admission to the PICU and mortality. DESIGN: Retrospective cohort study of admissions to PICUs in the Virtual Pediatric Systems (VPS, LLC, Los Angeles, CA) database from 2009 to 2014.…
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such…
Objective: The aim of this study was to investigate the availability and utilization of palliative care units among children with cancer in Japan. Methods: We conducted a nationwide cross-sectional survey of 368 palliative care units. We sent a…
Pediatric residents report they are not sufficiently trained to communicate with families at a child's death. We performed a study to prove feasibility and assess whether simulation improves their communication and experience. Residents were assigned…
INTRODUCTION: In 2013, 55,000 infants and children, aged 0 to 14, died in the United States. Nearly 7,000 of those deaths were attributed to traumatic causes. A child's death significantly affects emergency service personnel (ESP) caring for children…
Background: Researchers report difficulties in conducting research with children and young people with life-limiting conditions or life-threatening illnesses and their families. Recruitment is challenged by barriers including ethical, logistical and…
Background Studies have documented the experiences of families with seriously ill children, but few have focused on the spiritual needs of families confronted with a child's imminent death.
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a…
