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 2926–2950 of 4332 publications
Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and ma…
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of H…
Hospice nurses request paediatric-specific educational resources and training programs to improve care for children and families in the community: Qualitative data analysis from a population-level survey
BACKGROUND: Children with serious illness who receive hospice care often interface with nurses who lack training, experience and comfort in the provision of paediatric palliative and hospice care. Hospice nurse preferences for paediatric-specific training are …
Hospital admissions into paediatric palliative care: A retrospective study
Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the PPCU of the …
Hospital Clown Narratives in Pediatric Palliative Care
The goal of this qualitative research was to achieve a deeper psychological understanding of professional hospital clown work with hospitalized children during their end-of-life care period. Using a statistical text analysis with a co-occurrence strategy we sh…
Hospital inpatient use in mainland Portugal by children with complex chronic conditions (2011 - 2015). [Portuguese]
Introduction: Due to epidemiological change, interest in complex chronic conditions has been increasing within the pediatric health system. As such, we aim to evaluate hospital inpatient care in the National Health Service (mainland Portugal) by pediatric pati…
Hospital or Home? Where Should Children Die and How Do We Make that a Reality?
CONTEXT: Most of the 20,000 US children dying of serious illnesses annually die in the hospital. It is unknown if this hospital death predominance reflects family wishes or systemic issues such as lack of hospice access. Hence, we need to better understand loc…
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to id…
Impact of a Massage Therapy Intervention for Pediatric Palliative Care Patients and Their Family Caregivers
Context: All inpatient children receiving pediatric palliative care consults at a free-standing children's hospital.Objectives: To explore the impact of massage therapy on pediatric palliative care patients' symptom burden and medication use pattern, to descri…
Impact of Race and Ethnicity on End-of-Life Experiences for Children With Cancer
BACKGROUND:: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly underst…
Impact of Specialized Pediatric Palliative Care: A Systematic Review
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to seriously ill c…
Impact of specialized pediatric palliative care programs on communication and decision-making
OBJECTIVE: To summarize and analyze the impact of specialized pediatric palliative care (SPPC) programs on communication and decision-making for children with life-threatening conditions. METHODS: Our search strategy covered MEDLINE, PsycINFO, Cochrane Central…
Implications of Pediatric Palliative Consultation for Intensive Care Unit Stay
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospita…
Improving pediatric palliative care communication with primary care providers: Development and implementation of a discharge letter writing system and palliative care plan
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integ…
Improving Pediatric Palliative Care communication with Primary Care Providers: Development and implementation of a discharge letter writing system and palliative care plan
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life threatening conditions. Optimal PPC navigates between both inpatient and outpatient domains thus making the patient’s primary care physician (PCP) an integ…
Improving pediatric palliative care in a community-based setting through an ongoing education series
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hosp…
Inborn Errors Of Metabolism In Neonatal Period: A Challenging Management In Tunisia
OBJECTIVE: To assess clinical presentation of inborn errors of metabolism in neonatal period and to identify challenges in their management. METHODS: This is a retrospective study carried out in the department of Intensive Care and Neonatal Medicine of Monasti…
Increasing access to evidence-based pediatric palliative care through continuing education of nurses
BACKGROUND: Each year approximately 42,000 children die and 400,000 children cope with chronic or life threatening illnesses in the U.S. Improved access to evidence based pediatric palliative care is essential to ease suffering, manage distressing symptoms and…
Increasing joy for pediatric palliative care providers: #pactimpact a quality improvement initiative for resiliency in the workplace
Our pediatric palliative care group is called the "Pediatric Advanced Care Team," also known as "PACT." We created a novel system called #PACTimpact to identify situations in which team members go above and beyond for patients providing meaningful impact for o…
Influence of health interventions on quality of life in seriously ill children at the end of life: A systematic review protocol
Background
Seriously ill children suffer from numerous symptoms at the end of their lives, including pain, anxiety, and restricted communication. There are currently no comprehensive overviews of which health interventions have proven benefits and which have p…
Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review
CONTEXT: Pediatric palliative care (PPC) is intended to promote children's quality of life by using a family-centered approach. However, the measurement of this multidimensional outcome remains challenging. OBJECTIVE: To review the instruments used to assess t…
Integrating palliative care into the community: the role of hospices and schools
OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public healt…
Integrating palliative care to improve the care of children living with HIV in Indonesia
There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative car…
Integrating the Comfort Theory Into Pediatric Primary Palliative Care to Improve Access to Care
Primary palliative care improves access to symptom control and quality-of-life care for children and families and can reduce moral distress in clinicians. This article describes the application of a nursing theory framework for an evidence-based practice/quali…
Integration of Pediatric Palliative Care Into Cardiac Intensive Care: A Champion-Based Model
Integration of pediatric palliative care (PPC) into management of children with serious illness and their families is endorsed as the standard of care. Despite this, timely referral to and integration of PPC into the traditionally cure-oriented cardiac ICU (CI…