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 3701–3725 of 4332 publications
Parental experiences with a paediatric palliative care team: A qualitative study
Background: Parents of children with a life-limiting disease have to rely on themselves at home while adequate paediatric palliative care is lacking. In several countries, paediatric palliative care teams are introduced to ensure continuity and quality of care…
[Parental mourning after a perinatal loss]
The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been progressively recogniz…
Parent Distress and the Decision to Have Another Child After an Infant's Death in the NICU
OBJECTIVE: To examine associations among parent perceptions of infant symptoms/suffering, parent distress, and decision making about having additional children after an infant's death in the NICU.
DESIGN: Mixed-methods pilot study incorporating mailed surveys …
Parent experience of neonatal encephalopathy: The need for family-centered outcomes
We aimed to characterize the parent experience of caring for an infant with neonatal encephalopathy. In this mixed-methods study, we performed semistructured interviews with parents whose infants were enrolled in an existing longitudinal cohort study of therap…
Parent Grief 1-13 Months After Death in Neonatal and Pediatric Intensive Care Units
OBJECTIVE: Describe changes in mothers' and fathers' grief from 1 to 13 months after infant/child neonatal/pediatric intensive care unit death and identify factors related to their grief. METHODS: Mothers (n = 130) and fathers (n = 52) of 140 children (newborn…
Parents' needs for physician-parent communication in the face of life-threatening illness: Qualitative analysis
Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why physician…
Parents' Perception of Their Relationship Following the Loss of a Child
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss of a chil…
Patients' and Parents' Needs, Attitudes, and Perceptions About Early Palliative Care Integration in Pediatric Oncology
Importance: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients a…
Patterns of Care at the End of Life for Children and Young Adults with Life-Threatening Complex Chronic Conditions
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type.
STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; respo…
Pediatric advance care planning (pACP) for teens with cancer and their families: Design of a dyadic, longitudinal RCCT
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like careg…
Pediatric chronic patients at outpatient clinics: A study in a Latin American University Hospital
Objective: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. Methods: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one …
Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series
Objectives: To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation.Design: We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, …
Pediatric lung transplantation and end of life care in cystic fibrosis: Barriers and successful strategies
Pediatric lung transplantation has advanced over the years, providing a potential life-prolonging therapy to patients with cystic fibrosis. Despite this, many challenges in lung transplantation remain and result in worse outcomes than other solid organ transpl…
Pediatric Palliative Care Initiative in Cambodia
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeu…
Pediatric palliative care (PPC) access in Chile: Private practice health insurance law implementation
Background: There are 600 new pediatric cancer cases in Chile in a year, with an overall survival of 70% and there are two systems that guarantee the access for patients to health providers: The public system, or national health fund (FONASA), and the private …