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 2851–2875 of 4332 publications
Breaking Down Silos: Consensus-Based Recommendations for Improved Content, Structure, and Accessibility of Advance Directives in Emergency and Out-of-Hospital Settings
Background: Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may wor…
Building trust and improving communication with parents of children with Trisomy 13 and 18: A mixed-methods study
BACKGROUND:
Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare providers have…
Cannabis-based products for pediatric epilepsy: An updated systematic review
PURPOSE: To provide an up-to-date summary of the benefits and harms of cannabis-based products for epilepsy in children. METHODS: We updated our earlier systematic review, by searching for studies published up to May 2019. We included randomized controlled tri…
Cannabis Use in Children With Pantothenate Kinase-Associated Neurodegeneration
BACKGROUND: Pantothenate kinase-associated neurodegeneration is characterized by severe, progressive dystonia. This study aims to describe the reported usage of cannabis products among children with pantothenate kinase-associated neurodegeneration. METHODS: A …
Caregiver Decision-Making for Terminally Ill Children: A Qualitative Study
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical provi…
Caregiver Experience in Pediatric Dialysis
BACKGROUND AND OBJECTIVES: Pediatric dialysis is thought to be burdensome on caregivers given their need to assume dual responsibilities of parental and medical management of their child's chronic illness. In this study, we seek to describe the experience of p…
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Ho…
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for…
Challenges experienced by paediatricians providing palliative care to children; A thematic analysis
Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with life-limiting…
Challenges primary care providers face when caring for children with medical complexity
Background and Objective(s): Children with medical complexity (CMC) have multiple chronic health problems resulting in functional limitations and high resource utilization. Providing primary care for CMC can be time consuming and costly. This study aims to ide…
Changes in Siblings Over Time After the Death of a Brother or Sister From Cancer
Background: Limited research has examined the impact of a child's death from cancer on siblings. Even less is known about how these siblings change over time. Objective: This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a broth…
Characteristics and Outcomes of Critical Illness in Children With Feeding and Respiratory Technology Dependence
OBJECTIVES: Children with dependence on respiratory or feeding technologies are frequently admitted to the PICU, but little is known about their characteristics or outcomes. We hypothesized that they are at increased risk of critical illness-related morbidity …
Children Enrolled in Hospice Care Under Commercial Insurance: A Comparison of Different Age Groups
Background: Although most children at end of life have commercial insurance, little is known about their demographic and clinical characteristics, what care they are receiving, and how much it costs. Objectives: To describe commercially insured children who en…
Children's and Parents' Conceptualization of Quality of Life in Children With Brain Tumors: A Meta-Ethnographic Exploration
The concept of quality of life (QoL) is used in consultations to plan the care and treatment of children and young people (CYP) with brain tumors (BTs). The way in which CYP, their parents, and their health care professionals (HCP) each understand the term has…
Children's fears 2-13 months after sibling NICU/PICU/emergency department death
BACKGROUND AND PURPOSE: Sibling loss can heighten children's fears. Approximately two million children in the United States experience the death of a sibling each year, leaving 25% of them in need of clinical intervention and more than 50% with significant beh…
Children's unmet palliative care needs: a scoping review of parents' perspectives
BACKGROUND: Children with life-limiting conditions often have complex needs, making it challenging for services to provide satisfactory care. Few studies consider whether services actually meet families' needs by exploring and identifying the parents' perspect…
Choosing Between Medical Management and Liver Transplant in Urea Cycle Disorders - A Conceptual Framework for Parental Treatment Decision-Making in Rare Disease
BACKGROUND: Urea cycle disorders (UCD) are rare inherited metabolic disorders caused by deficiencies of enzymes and transporters required to convert neurotoxic ammonia into urea. These deficiencies cause elevated blood ammonia, which if untreated may result in…
Clinical practice and outcomes of palliative radiation therapy in pediatric oncology patients: An international comparison of experiences from two distinct countries and health care systems
Background and purpose: This study describes clinical outcomes of palliative radiation therapy (RT)for children treated in distinct health-care environments-the US where there is advanced integration of palliative resources and Brazil, a country in the process…
Coming 'Home': Place bonding for parents accessing or considering hospice based respite
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups a…
Communication about prognosis and end-of-life in pediatric organ failure and transplantation
BACKGROUND: Despite advancements in treatment and survival, pediatric organ failure and transplant populations continue to face significant risks of morbidity and mortality. Little scientific attention has been given to addressing the end-of-life care needs of…
Communication and the Appraisal of Uncertainty: Exploring Parents' Communication with Credible Authorities in the Context of Chronic Childhood Illness
Individuals with chronic illnesses must manage long-term uncertainty as they cope with the ways the illness influences their lives. In the context of pediatric illnesses, parents must manage uncertainty during the diagnosis and treatment of their child's illne…
Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care i…
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described,…
Content review of pediatric ethics consultations at a cancer center
Background/objectives: Ethical challenges in pediatric oncology arise at every stage of illness. However, there are sparse data on the content of and reason for ethics consultations in the field. We sought to evaluate the content and characteristics of ethics …
Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study
BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant out…