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 951–975 of 4332 publications
Hand Castings of Children With Terminal Illnesses From Cancer Can Provide Comfort to Grieving Families
Registered nurses have voluntarily created hand casts for families, providing comfort during challenging moments. Hand casting moves the patient's family and nurses. As requested by parents, staff apply a quick-drying gel to sick children's hands and feet. Aft…
Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer
PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We…
Has Pediatric Palliative Care Become Too Deferential? A Challenge To and For the Field
Outcomes: 1. Utilizing a case-based approach plus content expert didactic presentation, participants will self-report ability to identify 3 defensive mechanisms utilized by caregivers and providers during shared decision making (SDM) that can compromise its ou…
Health anxiety by proxy - through the eyes of the parents
Abstract
Health anxiety by proxy is a newly described phenomenon where parents worry excessively that their child suffers from a serious illness. In a former study, six parents with distressing worries about their child's health were interviewed to develop the…
Healthcare costs and utilization in medically fragile pediatric patients during the first year of care coordination
The current study explored the impact of pediatric outpatient care coordination across the first year of enrollment to better understand how services can be stratified for medically fragile children to ensure their needs are met. A retrospective chart review w…
Healthcare personnel's perspectives on health technology in home-based pediatric palliative care: a qualitative study
Background: In the context of pediatric palliative care, where the quality of life of children with life-limiting or life-threatening conditions is of utmost importance, the integration of health technology must support the provision of care. Research has high…
Healthcare service use for children with chronic complex diseases: A longitudinal six-year follow-up study
PURPOSE: The objective was analysed the patterns use of healthcare services of this population and the influence of their clinical and sociodemographic characteristics. DESIGN AND METHODS: A six-year longitudinal follow-up study was performed to evaluate the a…
Healthcare Utilization in Pediatric Cancer Patients Near the End-of-Life
Objective: Describe the healthcare utilization in the last 60 days of life in pediatric patients with cancer who died at home under hospice care and those that died in the hospital. Methods: Retrospective chart review of the medical records of those children w…
Health-illness transition processes in children with complex chronic conditions and their parents: a scoping review
Background: The prevalence of complex chronic conditions (CCC), which cause serious limitations and require specialized care, is increasing. The diagnosis of a CCC is a health-illness transition for children and their parents, representing a long-term change l…
HELPING THE HELPERS - SUPPORT IN CHILD BEREAVEMENT FOR PAEDIATRIC HEALTH CARE STAFF
Objectives Around 70% of children with life-limiting conditions will die in hospital,1 meaning many paediatric staff will encounter death during their clinical duties. Observing and experiencing grief around a child's death can have a detrimental impact on pro…
Home-Based Pediatric Hospice and Palliative Care Provider Visits: Effects on Healthcare Utilization
Objective This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare utilization. Study design Retrospective review of individuals ages 1 month to 21 years receiving an…
Hospitalization- and death-related financial and employment effects in parents of children with life-limiting conditions: a fixed-effects analysis
Abstract
The purpose of this study is to investigate out-of-pocket non-medical expenses and employment-related outcomes in families of children with life-limiting conditions, specifically, to quantify the financial and employment implications of two events: a …
Household material hardship and distress among parents of children with advanced cancer: A report from the PediQUEST Response trial
BACKGROUND: The prevalence and characteristics of household material hardship (HMH) in families of children with advanced cancer and its association with parent distress are unknown and herein described. METHODS: Parents of children aged ≥2 years with advanced…
How Do Children With Medical Complexity Die? A Scoping Review
Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about…
How to move forward in shared decision-making in pediatric palliative care
Pediatric palliative care has grown immensely in recent years in the world. However, shared decision-making remains a complex process, especially in pediatric palliative care. In particular, a number of issues are priorities to improve the shared decision-maki…
‘‘I am the mother of the kind of child you dread having’’: Experiences of living with chronic sorrow among parents with a disabled child
Chronic sorrow involves parents’ enduring grief due to their child’s disability. This stems not only from the recurring painful reality parents face, which differs from the life they had hoped for their children, families, and themselves but from also being co…
Immersive Virtual Reality for Pain and Anxiety Management Associated with Medical Procedures in Children and Adolescents: A Systematic Review
(1) Objectives: The purpose of this study was to investigate the studies that evaluate the effectiveness of immersive virtual reality (VR) as a distraction technique for pain and anxiety associated with medical procedures in children and adolescents. (2) The m…
Impact of care coordination on service utilisation for children with medically complex cerebral palsy
Aim: Complex care programmes for children with medically complex cerebral palsy (CP) exist; however, evidence for their impact is limited. This study (i) explored the impact of The Royal Children's Hospital Complex Care Hub (CCH) on hospital service utilisatio…
Impact of disability-based discrimination in healthcare on parents of children with medical complexity.
AIM: To qualitatively assess the impact of disability-based discrimination in healthcare on the parents of children with medical complexity (CMC)., METHOD: In this qualitative study, we conducted in-depth, semi-structured interviews with the parents of CMC. Da…
Impact of Subspecialty Pediatric Palliative Care on Children with Heart Disease; A Systematic Review and Meta-analysis
While many experts in pediatric cardiology have emphasized the importance of palliative care involvement, very few studies have assessed the influence of specialty pediatric palliative care (SPPC) involvement for children with heart disease. We conducted a sys…
Implementation and Evaluation of a Pediatric Palliative Care Curriculum for Adult-Track HPM Fellows
Introduction: Hospice and Palliative Medicine (HPM) fellowship training provides education on caring for patients from early childhood through adulthood. Yet, there are few guidelines about how to teach these key components, and more specifically the component…
Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times
BACKGROUND: The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, litt…
Improving family grief outcomes: A scoping review of family-based interventions before and after the death of a child
Background: Experiencing the illness and death of a child is a traumatic experience for the parents and the child's siblings. However, knowledge regarding effective grief interventions targeting the whole family is limited, including how to integrate age-appro…
Improving Pediatric Residency End-Of-Life Education: A Quality Improvement Approach
Outcomes: 1. Participants will be able to understand that a quality improvement model is an effective method for developing graduate medical education curricula for end-of-life care. 2. Participants will be able to recognize the lack of pediatric resident phys…
Improving Pediatric Residents' Comfort and Facility with End-of-Life Care with a Just-In-Time Online Module
Outcomes: 1. Participants will be able to learn how a just-in-time module can be constructed to address both resident needs and palliative care teaching goals. 2. Participants will be able to describe different ways in which a just-in-time module can improve r…