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 726–750 of 4332 publications
The Need for Pediatric Palliative Care in Romania: A Retrospective Study (2022–2023) Based on Quantitative Research and Analysis of Secondary Statistical Data
Background and Objectives: Estimating the need for palliative care for children is a crucial step in addressing the needs of children facing life-threatening conditions, while providing a powerful argument to combat unacceptably wide disparities in access to c…
The Network of Pediatric Palliative Care Educators: Cultivating Community in Interprofessional Education
Context: Interprofessional education is essential to pediatric palliative care (PPC), however, to date the PPC community has no dedicated organization of educators.
Objectives: To conceptualize and create a PPC educational community of practice (CoP): the Net…
The perinatal bereavement of a twin: Support from pregnancy until telling the surviving twin
This article aims to provide practical recommendations of support during the perinatal bereavement of a twin based on both clinical practice and scientific literature. This loss is experienced by the parents as a challenging moment, with a risk of developing m…
THE PHARMACY TECHNICIAN WITHIN A CHILDREN'S HOSPICE: BUILDING NEW ROLES
Background Hope House Children's Hospice supports seriously ill children by offering respite, symptom management and end of life care across their two hospices which cover Shropshire, Cheshire, Powys, and North Wales. Combined the hospice's reach approximately…
The Preference for Acute Rehospitalization Scale: Evaluating Preference for Acute Rehospitalization in Pediatric Hospice Patients
Introduction: Since the passage of the Affordable Care Act, children are able to access pediatric hospice while still pursuing life-prolonging care. This can create confusion between hospice and palliative care staff and families about current goals of care (G…
“There is nothing I can’t face now”: Coping with child loss among bereaved parents in Ghana
Coping resources play a critical role in parents’ recovery from the trauma associated with child loss. In Ghana, little is known about how parents cope with child loss despite the relatively high prevalence of child loss in the country. This study, therefore, …
The Rhythm of Connection: Describing the Heartbeats Intervention for Patients and Families Receiving Paediatric Palliative Care
Music therapy in paediatric palliative care offers a unique opportunity for emotional support, legacy creation, and therapeutic connection for children and their families. This paper describes the Heartbeats Intervention, as delivered by a paediatric palliativ…
The Role of Attachment in Perinatal Loss: A Systematic Review
Perinatal loss (PL) disrupts maternal-fetal attachment (MFA) and poses significant emotional challenges for parents and their future children. The attachment style of parents prior to the loss is crucial for their adjustment to PL. This systematic review exami…
The Role of Genetic Testing in Palliative Care Decisions for Critically Ill Newborns
Abstract
Genetic testing is rapidly becoming standard practice in the care of critically ill newborns within NICUs. Numerous studies have demonstrated the utility of genetic testing, including changes in clinical care, improved diagnostic certainty, and cost s…
The Role of IR in Pediatric Pain and Palliation
Pediatric chronic pain is a significant problem that is often underreported and therefore not always adequately addressed. Causes include anatomic variants, trauma, local inflammation, and malignancy. Nerve blocks and cryoneurolysis can aid as an adjunct to pa…
The Scope of Clinical Practice of Inpatient and Outpatient Pediatric Palliative Care Within Pediatric Oncology
Background: While pediatric palliative care (PPC) is associated with improved end-of-life (EOL) outcomes for children with cancer, the content of PPC visits leading to these outcomes is not well-understood. This study aims to compare the scope of PPC practice …
The silent grief of grandmothers after an out-of-order death-An interpretative phenomenological analysis
This study delves into the lived experiences of grandmothers grappling with grief following the "out-of-order" death of a child, child-in-law, or grandchild, using an Interpretative Phenomenological Analysis grounded in the Dual Process Model-Revised. With 70%…
The space between life and death: monumentality and the architecture of dying in paediatric palliative care
This study examines how architectural design navigates the threshold between life and death in paediatric palliative care environments. While ‘homelike’ hospice models have gained attention, little research has addressed how spatial design engages with the pre…
The spiritual needs and care of children and young people with life-threatening or life-shortening conditions, and parents (SPARK): a mixed-method investigation
Background
The human experience comprises four interconnected dimensions: physical, psychological, social and spiritual. Our spirituality is evidenced in the need to make sense of and find meaning, to feel our lives have purpose, to feel we matter and to feel …
The State of Pediatric Concurrent Hospice Care in the United States
The Patient Protection and Affordable Care Act (ACA) required all state Medicaid programs to pay for both curative and hospice services for children and adolescents. The purpose of this Special Article report is to quantify and describe the use of concurrent c…
The St. Jude Global Academy: A Multifaceted Education Program to Expand Pediatric Oncology Workforce Capacity
There is currently a global shortage of healthcare professionals equipped to handle the rising burden of childhood cancer. St. Jude Global is an initiative to improve survival rates of children with cancer worldwide while improving access to quality care. One …
The Unmet Needs of Parents in Pediatric Palliative Care: A Qualitative Systematic Review
Background: The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Although the current evidence suggests that the existing palliat…
The Use of Biased Language in the Care of Seriously Ill Children: A Pilot Study
BackgroundImplicit bias pervades health care, decreases quality of care, and disproportionately affects health outcomes for persons of color. Little is known about the use of biased language in the care of seriously ill children as documented in the electronic…
The weight of words: Language and ethics in pediatric palliative care
"Reflection
A young man – who loved fishing, adored football, and dreamed of becoming an engineer – lay dying in the intensive care unit as leukemia and infection devastated his body. Confronted with the unimaginable, his parents chose to implement a Do Not Re…
"They had to watch": How parents perceive the suffering of siblings of children with cancer
AIMS: While many siblings of children with cancer demonstrate resilient outcomes, they also face their own unique experiences that increase their risk for acute and long-term psychosocial difficulties. It is accepted that children undergoing cancer treatment e…
"This Kind of Thing is Part of His Legacy": Bereaved Parents' Experiences of Participating in Interview-Based Research
Background: Every year, a significant number of parents/caregivers experience the loss of a child, many of whom have received palliative care services. The resultant consequences of grief on their physical and psychological well-being can be significant. Littl…
Too vulnerable? Successful practices for conducting research with children and young people who have life-limiting or life-threatening illness
BACKGROUND: A dearth of evidence exists on how to include children and young people in palliative care research. AIM: We aimed to identify successful practices in involvement, recruitment and data collection with children and young people with life-limiting il…
Towards new perspectives: International consensus guidance on dystonia in pediatric palliative care
Background
Pediatric dystonias are associated with a broad spectrum of etiologies, resulting in a heterogeneous patient population in whom clinical presentation, evolution, and therapeutic needs may differ. These neurological symptoms are particularly common i…
Training programs in communication skills for healthcare professionals caring for children with life-limiting and life-threatening conditions and their families: A systematic review of healthcare professionals' behavioral impact and children's health outcomes
Background: Effective communication has potential benefits for children, their families, and healthcare professionals. Although communication skills training programs are essential for healthcare professionals, their effects remain unclear.
Aim: This review s…
Trisomy 18 and the possibility of choice: The importance of Perinatal Hospice's support
Trisomy 18 is a severe aneuploidy associated with multiple malformations and a poor prognosis. The diagnosis is typically made prenatally, leading to a high rate of pregnancy terminations. The aim of this study is to demonstrate that even though the prognosis …