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 3076–3100 of 4332 publications
Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This stud…
The mother's risk of premature death after child loss across two centuries
While the rare occurrence of child loss is accompanied by reduced life expectancy of parents in contemporary affluent populations, its impact in developing societies with high child mortality rates is unclear. We identified all parents in Iceland born 1800-199…
The National Palliative Care Registry: A Decade of Supporting Growth and Sustainability of Palliative Care Programs
Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry ("the Registry") …
The Photographs of Meaning Program for Pediatric Palliative Caregivers: Feasibility of a Novel Meaning-Making Intervention
Background: Research indicates that informal caregiving can have intense physical and mental impact on the individual. Relative to caregivers of adults, pediatric palliative caregivers appear less in literature despite experiencing greater mental, physical, fi…
The Prevalence of Nonprescription Cannabinoid-Based Medicines in British Children's Hospices: Results of a National Survey
BACKGROUND: Almost 50,000 children and young people are affected by life-limiting conditions in the United Kingdom, around a third of which use children's hospices. Anecdotal evidence suggests that cannabinoid-based medicines (CBMs), specifically cannabis oil …
"There's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective: The goal of this project was to identify and define parent…
The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: a realist review of the literature
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their famil…
The use of a theatre workshop in developing effective communication in paediatric end of life care
Being able to communicate effectively is an essential skill for all nurses. Communication in paediatric end of life care can be challenging for both the student and lecturer as it is a rare experience and challenging to teach. Innovative approaches to teaching…
Timing of palliative consultation for children during a fatal illness
BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to …
Trends in incidence, prevalence, and mortality of neuromuscular disease in Ontario, Canada: a population-based retrospective cohort study (2003-2014)
Background: Population trends of disease prevalence and incidence over time measure burden of disease and inform healthcare planning. Neuromuscular disorders (NMD) affect muscle and nerve function with varying degrees of severity and disease progression. Objec…
Trigger Criteria to Increase Appropriate Palliative Care Consultation in the Neonatal Intensive Care Unit
Introduction: Pediatric palliative care (PPC) seeks longitudinal relationships with patients facing life-threatening conditions. The majority of pediatric deaths occur within the first year of life, especially neonatal intensive care unit (NICU); however, the …
Use of Synchronous Digital Health Technologies for the Care of Children With Special Health Care Needs and Their Families: Scoping Review
BACKGROUND: Use of synchronous digital health technologies for care delivery to children with special health care needs (having a chronic physical, behavioral, developmental, or emotional condition in combination with high resource use) and their families at h…
Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and qu…
Utilization of palliative care consultations in pediatric oncology phase I clinical trials
Pediatric phase I clinical oncology trials represent a unique cohort of patients who have not responded to standard therapies and remain highly vulnerable to treatment toxicity and/or disease burden. Incorporating a palliative care consultation into the care p…
Utilizing a collaborative learning activity to sensitize interprofessional students to palliative care scopes of practice with adolescent and young adults
Adolescent and young adults diagnosed with cancer represent a vulnerable population needing careful collaborative care from interprofessional teams. Healthcare providers must understand and appreciate the respective scopes of practice of palliative care team m…
Variables associated with grief and personal growth following the death of a child from cancer: A mixed method analysis
This mixed method study explored parent and child characteristics that impact grief and personal growth in parents (n = 119) after a child dies from cancer in Australia. Medical components of a child's cancer care including radiation treatment, referral to pal…
Variation in Hospitalization Rates Following Emergency Department Visits in Children with Medical Complexity
Objectives: To evaluate factors associated with admission from emergency department (ED) encounters for children with medical complexity (CMC) and to quantify the hospital admission rate as well as variation in adjusted hospital admission rates across EDs.Stud…
Virtual Reality: Endless Potential in Pediatric Palliative Care: A Case Report
Pediatric palliative care deals with the physical, psychosocial, and spiritual concerns of patients and their families. And to do this, clinicians must use all the tools at their disposal, including pharmacological and nonpharmacological modalities. Virtual re…
Visualizing social support in home pediatric palliative care using network maps
BACKGROUND: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the…
Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month …
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships …
'We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.
Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availabil…
What impedes timely pediatric palliative care consults? A preliminary report
Background: Pediatric palliative care (PPC) provides support focused on comfort and wellbeing for patients with serious illness and their families and assists with difficult care decisions, aiming to align medical care with the goals and values of the patient …
When a Child Dies in the PICU: Practice Recommendations From a Qualitative Study of Bereaved Parents
OBJECTIVES: Around the world, the PICU is one of the most common sites for hospitalized children to die. Although ensuring the best possible care experience for these children and their families is important, clear recommendations for end-of-life and bereaveme…