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 2276–2300 of 4332 publications
Refining Patient-Centered Measures of End-of-Life Care Quality for Children With Cancer
PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures.
METH…
Refractory symptoms in paediatric palliative care: can ketamine help?
BACKGROUND: One of the main challenges for paediatric palliative care (PPC) is the management of concomitant, different and severe symptoms that frequently affect the quality of life of PPC patients and are often refractory to commonly used pharmacological tre…
Relationship Between Household Material Hardship and Distress in Parents of Children with Advanced Cancer: A Report from the PediQUEST Response Trial (T315A)
Objectives: 1. Explain the association between household material hardship and distress in parents of children with advanced cancer. 2. Propose how housing insecurity can be modified for families of children with advanced cancer through providing systematic ps…
Requests for Accommodation in Brain Death Cases: Emerging Role for Pediatric Palliative Care
Death by neurologic criteria is a diagnosis that has presented complexities since its inception and pediatric cases are no exception. While rare, families may request accommodation to deviate from the traditionally defined diagnostic pathway based on their bel…
Resources and Costs Associated With Repeated Admissions to PICUs
Objective:
To determine the costs and hospital resource use from all PICU patients readmitted with a PICU stay within 12 months of hospital index discharge.
Design:
Cross-sectional, retrospective cohort study using Pediatric Health Information System.
Se…
Retrospective Pediatric Telepalliative Care Experience
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisf…
Safety and Feasibility of Home Transfusions in Pediatric Palliative Care: A Preliminary Report
Background: While hematological symptoms are considered difficult to manage in a Pediatric Palliative Care setting, home may still represent a safe and convenient place for transfusions in patients with advanced malignancy or chronic conditions. This research …
Self-reported experiences of siblings of children with life-threatening conditions: A scoping review
Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining …
Shared decision making for children with chronic respiratory failure-It takes a village and a process
BACKGROUND AND OBJECTIVES: Shared decision making (SDM) before nonurgent tracheostomy in a child with chronic respiratory failure (CRF) is often recommended, but has proven challenging to implement in practice. We hypothesize that utilization of the microsyste…
Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement
Abstract Objective To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients? and family caregivers? meaningful engagement as partners in research projec…
Short-term Focused Feedback: A Model to Enhance Patient Engagement in Research and Intervention Delivery
Background: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents and other…
Sociodemographic and hospital-based predictors of intense end-of-life care among children, adolescents, and young adults with hematologic malignancies
Background: Children, adolescents, and young adults with hematologic malignancies tend to receive high-intensity end-of-life care (HI-EOLC), but sociodemographic and hospital-based predictors of HI-EOLC remain unclear. Method(s): The authors conducted a popula…
Something must happen before first breath
BACKGROUND: Definition and concept of the 'beginning of human life' are weakened by co-existing contrasting hypotheses based on humanistic or religious beliefs rather than scientific foundations. This plethora of conceptually distant views have important commo…
Songwriting intervention for cognitively-impaired children with life-limiting conditions: Study protocol
Investigations evaluating the effectiveness of music-based interventions as a complementary approach to symptom management and health promotion for cognitively-impaired children with life-limiting conditions and their families are needed to minimize the physic…
Specialized pediatric palliative care services in pediatric hematopoietic stem cell transplant centers
Hematopoietic stem cell transplantation (HSCT) is widely used in pediatric patients as a successful curative therapy for life-threatening conditions. The treatment is intensive, with risks of serious complications and lethal outcomes. This study aimed to provi…
Staff and Parent Perspectives on a Therapeutic Recreation-Based Bereavement Camp for Families Whose Child Has Died From Serious Illness
This study explores the nature of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness. Open-ended surveys and interviews were conducted with parents attending a three-camp cycle over a 12-month period or a reu…
'Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data fro…
Status of Palliative Oncology Care for Children and Young People in Sub-Saharan Africa: A Perspective Paper on Priorities for New Frontiers
PURPOSE: The burden of cancer disproportionately affects low- and middle-income countries. Low 5-year survival figures for children with cancer in low-income countries are due to late presentation at diagnosis, treatment abandonment, absence of sophisticated m…
“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Abstract
Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been…
Supporting Families Considering Participation in a Clinical Trial: Parent-Provider Perspectives
* Abbreviation:
CPN —
: Courageous Parents Network
The emergence of efficacious human gene therapy for life-limiting genetic diseases such as spinal muscular atrophy type 11 has raised hopes among families of children with previously incurable genetic disor…
Supporting the needs of adolescents and young adults: Integrated palliative care and psychiatry clinic for adolescents and young adults with cancer
Clinical guidelines aimed at cancer care for adolescents and young adults (AYAs) encour-age early integration of palliative care, yet there are scarce data to support these recommendations. We conducted a retrospective chart review of AYA patients, aged 15 to …
Surgical Interventions During End-of-Life Hospitalizations in Children's Hospitals
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 4…
Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants
AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-makin…
Synthesis of health promotion concepts in children's palliative care
BACKGROUND: Palliative care improves the health of children with a life-limiting condition and appears to draw implicitly on concepts shared with a model of health promotion. However, to date there has been no scrutiny about how this relationship may shape und…
Team value and visual voice: Healthcare providers' perspectives on the contributions and impact of Art Therapy in pediatric hematology/oncology clinics
Attending to the psychosocial needs of pediatric patients, families and health care providers (HCPs) is critical to the delivery of personalized medical care. Art therapy in this context has been found to be a source of holistic psychosocial support for pediat…