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 2451–2475 of 4332 publications
Considering medical assistance in dying for minors: the complexities of children's voices
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to ext…
Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with e…
Consulting with young people: informing guidelines for children's palliative care
OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Ex…
Continuous deep sedation at the end of life in children with cancer: experience at a single center in Japan
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in CDS in child…
Continuous positive airway pressure (CPAP) for respiratory distress in preterm infants
BACKGROUND: Respiratory distress, particularly respiratory distress syndrome (RDS), is the single most important cause of morbidity and mortality in preterm infants. In infants with progressive respiratory insufficiency, intermittent positive pressure ventilat…
Core Curricular Priorities in the Care of Children With Medical Complexity: A North American Modified Delphi Study
Background: Previous studies of pediatric residents have identified educational gaps in caring for children with medical complexity. Training opportunities in complex care vary across residency programs. Defining core curricular topics in complex care is a pri…
Coronavirus Disease-19 deaths among children and adolescents in an area of Northeast, Brazil: why so many?
OBJECTIVE: To describe COVID-19 deaths among children and adolescents in Sergipe, Brazil. METHODS: Ecological study of all COVID-19 reported cases and deaths occurring in children and adolescents <19 years of age in Sergipe reported by the health surveillance …
Correlation of Pediatric Palliative Screening Scale and Quality of Life in Pediatric Cancer Patients
CONTEXT: Palliative care in children is used to be only intended for those in near end-of-life phase. Ideally, palliative intervention should be given since the first time of cancer diagnosis. Palliative care is introduced from the beginning of the treatment b…
COVID-19 Pandemic Restrictions and the Use of Technology for Pediatric Palliative Care in the Acute Care Setting
The COVID-19 pandemic has caused health care facilities to restrict visitors for patients in all care settings. Most pediatric care facilities have restricted visitation to one parent at a time, unfortunately even if the child is in critical condition or is te…
Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventi…
Crying out in pain-A systematic review into the validity of vocalization as an indicator for pain
BACKGROUND: Vocalization is often used to assess pain, sometimes combined with other behaviours such as facial expressions. Contrary to facial expressions, however, for vocalization, there is little evidence available on the association with pain. The aim of t…
Customized pediatric palliative care: Integrating oncological and palliative care priorities
AIM: To describe the experience involving the early introduction of palliative care (PC) in oncological patients treated within the pediatrics oncology unit of the Istituto Nazionale Tumori of Milan andcompare this cohort to a cohort of patients resident in th…
Death of an Infant: Accessing the Voices of Bereaved Mothers to Create Healing
AIMS AND OBJECTIVES: To describe the health challenge for mothers whose infants have died and approaches and resources they used to manage the loss. BACKGROUND: The death of an infant is a devastating experience for families. Bereaved mothers have higher rates…
Decision aids available for parents making end-of-life or palliative care decisions for children: A scoping review
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Method(s): Six databases and the grey l…
Decision-making at the limit of viability: an overview
Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit …
Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative t…
Defining a "Good Death" in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers
Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider "best" practices. The objective of this study was to identify…
Defining a "Good Death" in the Pediatric Intensive Care Unit
BACKGROUND: Societal attitudes about end-of-life events are at odds with how, where, and when children die. In addition, parents' ideas about what constitutes a "good death" in a pediatric intensive care unit vary widely. OBJECTIVE: To synthesize parents' pers…
Defining Legacy: The Perceptions of Pediatric Health Care Providers
Legacy building interventions like plaster hand molds are offered in most children's hospitals, yet little is known about how the concept of legacy is understood and described by pediatric health care providers. Therefore, this study explored pediatric health …
Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas
Background: Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportu…
Defining the Boundaries of Palliative Care in Pediatric Oncology
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affecte…
Delivering Hospital-Based Pediatric Palliative Care: The Symptoms, Interventions, and Outcomes for Children With Cancer in Bangladesh
PURPOSE: The majority of pediatric cancer deaths occur in low- and middle-income countries (LMICs). Pediatric palliative care (PPC) focuses on relieving physical, psychosocial, and spiritual suffering throughout the continuum of cancer care and is considered i…
Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes
BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-lif…
Developing an Infrastructure for Bereavement Outreach in a Maternal-Fetal Care Center
Although bereavement programs are a common element of palliative medicine and hospice programs, few maternal-fetal care centers offer universal bereavement outreach services following perinatal loss. In this article, we describe the implementation of a bereave…