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 3901–3925 of 4332 publications
Children with minimal chance for cure: parent proxy of the child's health-related quality of life and the effect on parental physical and mental health during treatment
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and ev…
Child's symptom burden and depressive symptoms among caregivers of children with cancers: an argument for early integration of pediatric palliative care
BACKGROUND: Childhood cancers evoke various emotional reactions in caregivers which can impair their well-being and roles. Little is known about caregiving and which cancer-associated factors are related to caregiver's depression in resource-restricted setting…
Chronic critical illness in infants and children: A speculative synthesis on adapting ICU care to meet the needs of long-stay patients
Objectives: In this review, we examine features of ICU systems and ICU clinician training that can undermine continuity of communication and longitudinal guidance for decision making for chronically critically ill infants and children. Drawing upon a conceptua…
Clusters of Multiple Complex Chronic Conditions: A Latent Class Analysis of Children at End of Life
CONTEXT: Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in children at e…
Communication During Palliative Care and End of Life: Perceptions of Experienced Pediatric Oncology Nurses
BACKGROUND: Communication between patients, families, and healthcare providers is a central component of end-of-life care. Nurse communication during palliative care (PC) and end of life (EOL) is a phenomenon with limited research. It is unclear how the level …
Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study
BACKGROUND: Children with chronic complex-medical conditions comprise a small minority of children who require substantial healthcare with major implications for hospital utilization and costs in pediatrics. Community-Based Pediatric Palliative Care (CBPPC) pr…
[Comparison of palliative care representations between pediatrician residents and oncologist residents: A qualitative study]
BACKGROUND: Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and oncology residents on pa…
Compassionate deactivation of ventricular assist devices in pediatric patients
Despite greatly improved survival in pediatric patients with end-stage heart failure through the use of ventricular assist devices (VADs), heart failure ultimately remains a life-threatening disease with a significant symptom burden. With increased demand for …
Compassionate extubation in the home: It takes a team
Objectives * Describe steps to take before starting the procedure to ensure comfort for the patient and family. * Identify likely symptoms during and after the extubation and their management. * Describe ways to support family and staff during and after the ex…
Compassion fatigue, burnout and compassion satisfaction in neonatologists in the US
OBJECTIVE: Compassion fatigue (CF) is distress experienced by caregivers from ongoing contact with patients who are suffering. Burnout (BO) is occupational stress directly related to dissonance between job demands and available resources. Compassion satisfacti…
Contemporary Pediatric Palliative Care: Myths and Barriers to Integration into Clinical Care
At least 20 million children would benefit from Pediatric Palliative Care (PPC) annually, and 8 million children would need specialized PPC services. In the USA alone, more than 42,000 children 0-19 years died in 2013, fifty-five percent of them infants younge…
Cost Analysis and Policy Implications of a Pediatric Palliative Care Program
CONTEXT: In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life …
Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions
Objective: This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory. Methods: Grice's Cooperative Principle and associated maxims, which enable effective communi…
Decision making process of parents with seriously ill children at the hospital
Objectives * Identify the core category for parents of a seriously ill child about the decision making process at the hospital. * Identify parents' preferences when they have to make a decision on behalf of their seriously ill child. Original Research Backgrou…
Delivery room deaths of extremely preterm babies: an observational study
OBJECTIVE: Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual manag…
Depressive symptoms in mothers after perinatal and early infant loss in rural Bangladesh: a population-based study
PURPOSE: We examined stillbirth and neonatal death as predictors of depressive symptoms in women experiencing these events during the first 6 months postpartum. METHODS: We performed secondary analyses using data from 41,348 married women aged 13-44 years, ori…
Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers
Background: Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis…
Development and pilot evaluation of a home-based palliative care training and support package for young children in southern Africa
BACKGROUND: The leading cause of death among young children in southern Africa is complications due to HIV infection and, in South Africa, over a third of all deaths of children younger than five are associated with HIV infection. There is a great and urgent n…
Development of a logic model to support a network approach in delivering 24/7 children's palliative care: part one
AIM: This research aimed to develop and evaluate a 24/7 symptom-management service for children with life-limiting conditions and a model for palliative care nursing. STUDY DESIGN: A combination of audit and qualitative and quantitative evaluation. SAMPLE AND …
Diagnostic Testing and Hospital Outcomes of Children with Neurologic Impairment and Bacterial Pneumonia
OBJECTIVE: To assess hospital-level variability in diagnostic testing and outcomes for children with neurologic impairment hospitalized with pneumonia. STUDY DESIGN: A retrospective cohort study of 27 455 children ages 1-18 years with neurologic impairment hos…
Differences and similarities between mothers and fathers of premature children: a qualitative study of parents' coping experiences in a neonatal intensive care unit.
BACKGROUND: The aim of this study was to explore and describe the coping experiences of parents to children admitted to a neonatal unit., METHODS: A qualitative research approach was chosen, using in-depth interviews with eight fathers and eight mothers., RESU…