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 2001–2025 of 4332 publications
Challenges of paediatric palliative care in the intensive care unit during the COVID-19 pandemic
BACKGROUND: The integration of paediatric palliative care into the Iranian health system is essential. AIMS: The aim of this study was to identify the challenges of palliative care in the paediatric intensive care unit during COVID-19 through the experiences o…
Changing Pediatric Hospice and Palliative Care Through Medicaid Partnerships
Since its inception in 2010, the Concurrent Care for Children Provision of the Affordable Care Act has enabled seriously ill pediatric patients and their families to access comprehensive, supportive hospice services while simultaneously receiving ongoing treat…
CHILD-BRIGHT READYorNot Brain-Based Disabilities Trial: protocol of a randomised controlled trial (RCT) investigating the effectiveness of a patient-facing e-health intervention designed to enhance healthcare transition readiness in youth
Introduction Youth with brain-based disabilities (BBDs), as well as their parents/caregivers, often feel ill-prepared for the transfer from paediatric to adult healthcare services. To address this pressing issue, we developed the MyREADY TransitionTM BBD App, …
Children and adolescent solid tumours and high-intensity end-of-life care: what can be done to reduce acute care admissions?
Despite improvements in survival, cancer remains the leading cause of non-accidental death in children and adolescents, who risk receiving high-intensity end-of-life (HI-EOL) care. OBJECTIVE: To analyse treatments for relapses (particularly in the last weeks o…
Children and adolescents with cancer assisted in a Support Institution in Juiz de Fora, Minas Gerais, Brazil - Preliminary study
Introduction: The most frequent tumors in childhood are leukemias, central nervous system tumors, lymphomas, and neuroblastoma. According to Brazilian National Institute of Cancer (INCA), these patients should maintain follow-up with a multidisciplinary team f…
Children and adolescents with hematologic cancers deserve better end-of-life care
Children and adolescents with hematologic malignancies consistently experience higher rates of aggressive care at the end of life. Clinicians and researchers must now turn their attention to reducing this disparity.
Children's palliative care education and training: developing an education standard framework and audit
BACKGROUND: The need to align the range of guidance and competencies concerning children's palliative care and develop an education framework have been recommended by a UK All-Party Parliament Group and others. In response to these recommendations the need for…
Children's palliative care: examination of a nursing rotation programme
An 8-month rotation programme was implemented for five nurses employed in two kinds of children's palliative care environments: hospital wards and hospices. This study reports the views of the nurses completing the rotation. The research drew on appreciative i…
Children's visits to the paediatric intensive care unit from the nurses' experience
BACKGROUND: Family process disruption is one of the main consequences of the hospitalization of a critically ill child in a Paediatric Intensive Care Unit (PICU). Children's visits to PICU may help improve family coping. However, this is not standard practice …
Children with medical complexity: A concept analysis
AIM: The aim of this paper is to conduct a concept analysis on the term, "children with medical complexity." BACKGROUND: Children with medical complexity (CMC) describes pediatric patients with chronic, sustained acuity; however, there is a lack of consensus i…
Children with medical complexity and paediatric palliative care: a retrospective cross-sectional survey of prevalence and needs
Children with medical complexity (CMC) have been defined (Cohen et al., Pediatrics 127: 529–538, 2011.) as an emerging population potentially eligible for PPC. The current study investigated the prevalence of children with medical complexities eligible for a l…
Choiceless options: when hospital-based services represent the only palliative care offering
Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, hospital-based care models may be perceived as the only viable choic…
Clinical and Physiologic Factors Associated With Mode of Death in Pediatric Severe TBI
Aims and Objectives: Severe traumatic brain injury (sTBI) is the leading cause of death in children. Our aim was to determine the mode of death for children who died with sTBI in a Pediatric Critical Care Unit (PCCU) and evaluate factors associated with mortal…
Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions
OBJECTIVES: Children with complex chronic conditions often receive inpatient and end-of-life care in the ICU, yet little is known about the clinical care strategies that best support this unique group of parents. This study aimed to elucidate supportive clinic…
Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to AC…
'Cold bedrooms' and other cooling facilities in UK children's hospices, how they are used and why they are offered: A mixed methods study
BACKGROUND: The death of a child is acutely distressing. Evidence on the benefits and value to parents of spending time with their dead child have now been integrated into routine practice and is regarded as a bereavement support intervention. UK children's ho…
Comfort-holding in critically ill children: a scoping review
PURPOSE: To understand and summarize the breadth of knowledge on comfort-holding in pediatric intensive care units (PICUs). SOURCES: This scoping review was conducted using PRISMA methodology. A literature search was conducted in MEDLINE, EMBASE, PsycINFO, CIN…
Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families
BACKGROUND: In medical oncology, palliative care principles and advance care planning are often discussed later in illness, limiting time for conversations to guide goal-concordant care. In pediatric oncology, the frequency, timing and content of communication…
Communication strategies and persuasion as core components of shared decision-making for children with life-limiting conditions: A multiple case study
BACKGROUND: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. AIM: To explo…
Community Hospice Nurses' Perspectives on Needs, Preferences, and Challenges Related to Caring for Children With Serious Illness
Importance: Many of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience,…
Community Resource Connection for Pediatric Caregivers with Unmet Social Needs: A Qualitative Study
OBJECTIVE: Pediatric health systems are increasingly screening caregivers for unmet social needs. However, it remains unclear how best to connect families with unmet needs to available and appropriate community resources. We aimed to explore caregivers' percei…
Compassionate Deactivation of Pediatric Ventricular Assist Devices: A Review of 14 Cases
CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of children suppo…
COMPLETE (Communication Plan Early Through End of Life): Development of a research program to diminish suffering for children at end of life
While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children w…
Complexity of Medication Regimens for Children With Neurological Impairment
IMPORTANCE: Parents of children with severe neurological impairment (SNI) manage complex medication regimens (CMRs) at home, and clinicians can help support parents and simplify CMRs. OBJECTIVE: To measure the complexity and potentially modifiable aspects of C…
Coping with cystic fibrosis: An analysis from the sibling's point of view
Abstract Background Cystic fibrosis (CF) is a chronic, life-threatening condition that results in life-long morbidity and premature mortality. CF has a significant impact on healthy siblings' adaptation and well-being. Siblings of patients with a chronic disea…