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 3601–3625 of 4332 publications
Exploring the rewards and challenges of paediatric palliative care work - a qualitative study of a multi-disciplinary children's hospice care team
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is known abo…
Factors Associated with Use of U.S. Community-Based Palliative Care for Children with Life-Limiting or Life-Threatening Illnesses and Their Families: An Integrative Review
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliati…
Factors Related to Parent Attendance at a Follow-Up Meeting With an Intensivist After a Child's Death in the Pediatric Intensive Care Unit
Parents who experience the death of a child are at high risk for psychopathology. Because a large percentage of pediatric deaths occur in the pediatric intensive care unit each year, a follow-up meeting between bereaved parents and intensivists could provide e…
Families are not the barrier: Evaluating attitudes toward early integration of palliative care in pediatric hematopoietic stem cell transplant
Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patien…
Feeding Intolerance in Children with Severe Impairment of the Central Nervous System: Strategies for Treatment and Prevention
Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms include con…
[First requests for a regional pediatric palliative care team: A prospective and observational study]
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze the respo…
Four steps to eliminate or reduce pain in children caused by needles (part 1)
Dr Stefan Friedrichsdorf speaks to Jade Parker, Commissioning Editor: Stefan J Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children’s Hospitals and Clinics of Minnesota, Minneapolis/St…
GPs and paediatric oncology palliative care: a Q methodological study
OBJECTIVE: This mixed-methods study set in the West Midlands region of the UK demonstrates the effectiveness of Q methodology in examining general practitioners' (GPs') perception of their role in children's oncology palliative care. METHODS: Using data obtain…
Healing Touch: Positively Sharing Energy in a Pediatric Hospital
As a fellowship trained palliative care physician impressed by the complementarity of Palliative and Integrative Medicine, I am reporting on recent experiences with healing touch in our pediatric hospital (Children's Hospital and Medical Center in Omaha, Nebra…
Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study
Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of …
Healthcare Utilization and Spending for Constipation in Children With Versus Without Complex Chronic Conditions
OBJECTIVES: The aim of the study was to examine the prevalence of diagnosis and treatment for constipation among children receiving Medicaid and to compare healthcare utilization and spending for constipation among children based on number of complex chronic c…
Historical developments in children's deep brain stimulation
Background Heterogeneous by the underlying pathobiology and clinical presentation, childhood onset dystonia is most frequently progressive, with related disability and limitations in functions of daily living. Consequently, there is an obvious need for efficie…
Home-Based Palliative Care for Children With Incurable Cancer: Long-term Perspectives of and Impact on General Practitioners
Context: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with in…
Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from 2007 to 2010…
Hospitalizations for mitochondrial disease across the lifespan in the U.S
IMPORTANCE: Mitochondrial disease is being diagnosed with increasing frequency. Although children with mitochondrial disease often have severe, life-limiting illnesses, many survive into adulthood. There is, however, limited information about the impact of mit…
How Parents of Children With Cancer Learn About Their Children's Prognosis
OBJECTIVES: To determine which prognostic information sources parents find informative and which are associated with better parental understanding of prognosis. METHODS: Prospective, questionnaire-based cohort study of parents and physicians of children with c…
'I can't tell my child they are dying'. Helping parents have conversations with their child
This paper explores the challenges of resolving conflicting feelings around talking with a child about their terminal prognosis. When children are left out of such conversations it is usually done with good intent, with a parent wishing to protect their child …
Identifying domains of quality of life in children with cancer undergoing palliative care: A qualitative study with professionals
OBJECTIVE: The goal of pediatric palliative care (PPC) is to maintain the quality of life (QoL) of children whose lives are threatened. However, there are sparse scientific data on the domains of QoL in this particular context, and no measurement strategies ar…
Illness recognition, decision-making, and care-seeking for maternal and newborn complications: a qualitative study in Jigawa State, Northern Nigeria
BACKGROUND: Maternal mortality and newborn mortality continue to be major challenges in Nigeria, with the highest levels in the northern part of the country. The objective of this study was to explore the process and sequence of symptom recognition, decision-m…