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 2701–2725 of 4332 publications
Preparing Nurses for Palliative Care in the NICU
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: …
Primary palliative care: Skills for all clinicians
The number of children with life-threatening and life-limiting conditions is increasing, requiring an individualized approach and additional supportive care. The American Academy of Pediatrics has called for pediatric palliative care to be available to all chi…
Prospective, phenotype-driven selection of critically ill neonates for rapid exome sequencing is associated with high diagnostic yield
PURPOSE: To investigate the impact of rapid-turnaround exome sequencing in critically ill neonates using phenotype-based subject selection criteria. METHODS: Intensive care unit babies aged <6 months with hypotonia, seizures, a complex metabolic phenotype, and…
Providing Support for Neonatal Intensive Care Unit Health Care Professionals: A Bereavement Debriefing Program
OBJECTIVE: The aim of this study is to evaluate formal bereavement debriefing sessions after infant death on neonatal intensive care unit (NICU) staff. STUDY DESIGN: Prospective mixed methods study. Pre- and postbereavement debriefing intervention surveys were…
Psychopharmacology in the Pediatric Oncology and Bone Marrow Transplant Units: Antipsychotic Medications Palliate Symptoms in Children with Cancer
Objectives: The present study characterized the psychiatric diagnoses and symptoms that led to the administration of antipsychotic medications in children and adolescents with cancer, and to evaluate the benefits and tolerability of these drugs in a large hosp…
Qualitative assessment of patient-provider communication and provider reporting on misclassification of stillbirths and early neonatal deaths in Ethiopia
BACKGROUND: Poor communication between patients and providers can lead to misunderstanding and misclassification of clinical information, including pregnancy outcomes by women. This qualitative study with maternity care providers explores patient-provider comm…
Quality of Life of Children and Adolescents Undergoing Hematopoietic Stem Cell Transplantation Is Negatively Affected by Psychological Distress Experienced by Their Parents: A Case for Pediatric Palliative Care (RP410)
Objectives: * State the elements and trajectory of distress for parents caring for children and adolescents undergoing hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor (CAR) T-cell therapy. * Examine the impact of parent distress on …
"Quality of life": parent and neonatologist perspectives
OBJECTIVE: To assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY DESIGN: Surveys were developed and administered to neonatologists and eli…
Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer
Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer. Objective(s): To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer. Method(s): W…
Rapid response in the COVID-19 pandemic: a Delphi study from the European Pediatric Dialysis Working Group
BACKGROUND: COVID-19 was declared a global health emergency. Since children are less than 1% of reported cases, there is limited information to develop evidence-based practice recommendations. The objective of this study was to rapidly gather expert knowledge …
Reaching the Unreached: Providing Quality Care to HIV-Infected Children through Telemedicine-An Innovative Pilot Initiative from Maharashtra, India
BACKGROUND: The National AIDS Control Organization (NACO) of India created the Regional Pediatric Antiretroviral Therapy (ART) Center; this was subsequently upgraded to seven Pediatric Centers of Excellence (PCoEs) to strengthen the quality of treatment and ca…
Reconsidering early parental grief following the death of a child from cancer: a new framework for future research and bereavement support
Purpose: Parents of children that die from cancer are at increased risk of significant long-term psychosocial and physical morbidities. Less, however, is known about the experience of parents early in the grief process. Currently used frameworks and instrument…
Reflecting on 'Hannah's Choice': Using the Ethics of Care to Justify Child Participation in End of Life Decision-Making
It has been ten years since the case of Hannah Jones-the 12-year-old girl who was permitted to refuse a potentially life-saving heart transplant. In the past decade, there has been some progress within law and policy in respect of children's participatory righ…
Reflections on charlie gard and the best interests standard from both sides of the atlantic ocean
Charlie Gard (August 4, 2016, to July 28, 2017) was an infant in the United Kingdom who was diagnosed with an encephalopathic form of mitochondrial DNA depletion syndrome caused by a mutation in the RRM2B gene. Charlie's parents raised 1.3 million (~$1.6 milli…
Regret and unfinished business in parents bereaved by cancer: A mixed methods study
BACKGROUND: Prior research has demonstrated that the presence of regret and unfinished business is associated with poorer adjustment in bereavement. Though there is a growing literature on these constructs among caregivers of adult patients, the literature on …
Research Cooperative Groups in Pediatric Palliative Care Research
Research cooperative groups aim to facilitate collaborative and rigorous palliative care research. The purpose of this article is to (1) demonstrate how cooperative groups are taking formal and sustainable steps with commitment to pediatric palliative care res…
Response and role of palliative care during the COVID-19 pandemic: A national telephone survey of hospices in Italy
Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the COVID-19 pande…
Rural Perinatal Loss: A Needs Assessment
The purpose of this research was to ascertain the availability and depth of services of bereavement care for mothers who live rurally. The specific focus is on those who experienced early losses including pregnancy, stillbirth, neonatal, and young children who…
Safety and pharmacokinetics of medical cannabis preparation in a monocentric series of young patients with drug resistant epilepsy
OBJECTIVES: To evaluate safety and pharmacokinetic parameters (PK) of medical cannabis in add-on for children and young adults with drug-resistant epilepsy. DESIGN, SETTING: Ten patients (4 females, 6 males, age 2.5-23.2 years) were enrolled in a prospective o…
Safety in Pediatric Hospice and Palliative Care: A Qualitative Study
INTRODUCTION: Patient safety is extensively studied in both adults and pediatric medicine; however, knowledge is limited regarding particular safety events in pediatric hospice and palliative care (HPC). Additionally, pediatric HPC lacks a unified definition o…
Serious Illness Conversations in Pediatrics: A Case Review
The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their patient’s life in…
Seven Types of Uncertainty When Clinicians Care for Pediatric Patients With Advanced Cancer
Context: Clinicians deciding whether to refer a patient or family to specialty palliative care report facing high levels of uncertainty. Most research on medical uncertainty has focused on prognostic uncertainty. As part of a pediatric palliative referral inte…
Shared Decision-making With Parents of Hospitalized Children: A Qualitative Analysis of Parents' and Providers' Perspectives
OBJECTIVES: Shared decision-making (SDM) is the pinnacle of patient-centered care and has been shown to improve health outcomes, especially for children with chronic medical conditions. However, parents perceive suboptimal involvement during hospitalization. T…