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 2101–2125 of 4332 publications
Gaps in Palliative Care Education among Neonatology Fellowship Trainees
Background: To provide proper care for infants at risk for death, neonatologists need expertise in many areas of palliative care. Although neonatology training programs have implemented a wide variety of palliative care educational programs, the impact of thes…
Gastrointestinal Symptoms in Children With Life-Limiting Conditions Receiving Palliative Home Care
Context: Children with life-limiting diseases suffer from gastrointestinal (GI) symptoms. Since the introduction of specialized palliative home care (SPHC) in Germany, it is possible to care for these children at home. In phase 1 of care the aim is to stabiliz…
Global Experiences of Pediatric Palliative Care Teams During the First 6 Months of the SARS-CoV-2 Pandemic
Context: The coronavirus pandemic (COVID-19) has profoundly impacted the provision of pediatric palliative care (PPC) interventions including goals of care discussions, symptom management, and end-of-life care. Objective: Gaining understanding of the professio…
Goals of Care Discussions and Moral Distress among Neonatal Intensive Care Unit Staff
CONTEXT: The relationship between quality of Goals of Care (GOC) conversations and moral distress among NICU providers is not known. OBJECTIVES: We sought: 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress changes in …
Grief and Bereavement in Fathers After the Death of a Child: A Systematic Review
CONTEXT: The death of a child is devastating, and complicated grief adversely impacts parental physical and psychosocial well-being. Most research currently is centered on bereaved mothers, and the experiences of fathers remains underexplored. OBJECTIVE: We sy…
Grieving the loss of a child in times of COVID-19
Given the massive influences of COVID-19 restrictions on people in nearly all nations, we conducted an in-depth qualitative study of 15 Belgian parents who had lost a child prior to the pandemic in order to understand its impact on their ongoing bereavement. A…
Guidelines regarding ineffective maintenance of organ functions (futile therapy) in paediatric intensive care units
In Poland, guidelines for the management of ineffective treatment of children in neonatal and paediatric departments developed by the Polish Neonatal Society and the Polish Paediatric Society, have been published. The specific problems of futile therapy in pae…
Gulburra (to understand): Aboriginal Ability Linker’s person-centred care approach
Aboriginal and Torres Strait Islander people are experts and advocates in disability services. The Aboriginal Ability Links Program is one example where this expertise and advocacy occurs. The primary aim of the Aboriginal Ability Links Program is to support A…
Having Therapeutic Conversations With Fathers Grieving the Death of a Child
A child's death is a traumatic life experience for parents. Health-care professionals (HCPs) have sought guidance on how to intervene with grieving parents, particularly with fathers. Having therapeutic conversations is an effective way for HCPs to support gri…
Healthcare professionals' experiences of the barriers and facilitators to paediatric pain management in the community at end-of-life: A qualitative interview study
CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain managemen…
Healthcare professionals' views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)
Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s): To explore …
Healthcare Utilization of Complex Chronically Ill Children Managed by a Telehealth-Based Team
Objectives: Medical advances have improved survival of critically ill children, increasing the number that have substantial ongoing care needs. The first aim of this study was to compare healthcare utilization of children with complex chronic conditions across…
Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents' accounts in a palliative care setting: A qualitative study
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if adults are f…
High rate of clinically unrecognized SARS-CoV-2 infections in pediatric palliative care patients
Little is known about the frequency and clinical course of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) infections in pediatric patients with severe comorbidities. In this prospective cross-sectional trial, the seroprevalence of SARS-CoV-2-IgG …
Homestead together: Pediatric palliative care telehealth support for rural children with cancer during home-based end-of-life care
BACKGROUND: Children with terminal cancer and their families describe a preference for home-based end-of-life care. Inadequate support outside of the hospital is a limiting factor in home location feasibility, particularly in rural regions lacking pediatric-tr…
How Children and Youth with Medical Complexity Use Hospital and Emergency Department Care across Canada
Children and youth with medical complexity are a diverse group with uncommon diagnoses, a spectrum of needs and varying access to supports. Although this population represents a small proportion of all children, their unique needs lead to substantial use of he…
How doctors actually (do not) involve families in decisions to continue or discontinue life-sustaining treatment in neonatal, pediatric, and adult intensive care: A qualitative study
Background: Intensive care doctors have to find the right balance between sharing crucial decisions with families of patients on the one hand and not overburdening them on the other hand. This requires a tailored approach instead of a model based approach. Aim…
How to Open the Door: A Qualitative, Observational Study on Initiating Advance Care Discussions with Parents in Pediatric Palliative Care
Context: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element of successful pediatric advance care planning (pACP). Yet, they are perceived as a challenging situation fo…
Hyperoxemia Is Associated With Mortality in Critically Ill Children
Multiple studies among adults have suggested a non-linear relationship between arterial partial pressure of oxygen (PaO(2)) and clinical outcomes. Meta-analyses in this population suggest that high levels of supplemental oxygen resulting in hyperoxia are assoc…
Identifying as a Good Parent: Considering the Communication Theory of Identity for Parents of Children Receiving Palliative Care
Background: Parents of seriously ill children are at risk of psychosocial morbidity, which may be mitigated by competent family-centered communication and role-affirming conversations. Parent caregivers describe a guiding desire to do a good job in their paren…
Identifying Patterns of Pediatric Mental and Behavioral Health at End of Life: A National Study
Children, who enroll in hospice, have complex mental and behavioral health (MHBH) problems. There is limited literature on patterns of these problems among children at their end of life. Using the national database of 6195 children enrolled in hospice between …
"I grieve because I loved her:" Bereaved parents' perceptions of a mindfulness-based retreat
Mindfulness-based interventions have recently been applied to grief-related distress. However, little is known about how bereaved participants experience them. This study explored bereaved parents' experiences of a mindfulness-based grief retreat through semi-…
Impact of a multi-professional expert team on EOL care of children with cancer
BACKGROUND: The quality of end-of-life (Q-EOL) care is influenced by various factors such as resources for palliative care (PC). We introduced a multi-professional expert team (MET) in 2014, which provides home-based care for children and adolescents with incu…
Impact of a pediatric palliative care team on resident education in end of life care
Introduction: The presence of Pediatric Palliative Care (PPC) teams and PPC curricula at teaching hospitals are shown to increase resident physician education in pain and symptom management. However, their impact on residents' comfort in caring for children at…
Impact of educational programs on nurses' knowledge and attitude toward pediatric palliative care
OBJECTIVE: This study aims to assess the knowledge and attitude of nurses toward pediatric palliative care (PPC) and examine the impact of an educational program on pediatric nurses' knowledge and attitude regarding PPC for children facing life-threatening ill…