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 1876–1900 of 4332 publications
Survey of Pediatric Palliative Care Quality Improvement Training, Activities, and Barriers
Context Children with serious illness deserve high-quality pediatric palliative care (PPC). With expansion of PPC provision, it is important to understand the quality improvement (QI) activities of PPC clinicians and programs. Objectives To describe the 1) bac…
Symptoms and Suffering at End of Life for Children With Complex Chronic Conditions
Context: Children with cancer and cardiac disease suffer with high symptom burden at end of life (EOL). Little is known about the EOL experience for children with other complex chronic conditions (CCCs). Objective(s): To evaluate symptoms and suffering at EOL …
TAKING MEMORY MAKING TO THE NEXT LEVEL WITH THE USE OF RESIN
Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already included sensitiv…
Talking about the End of Life, Death and Bereavement with Children's Literature
Abstract
The French national centre of palliative and end-of-life care (Centre national des soins palliatifs et de la fin de vie) offers each year an updated selection of nearly 200 children's books for helping adults who accompany children who are seriously i…
TEETERING ON A CLIFF EDGE: TRANSITIONING BETWEEN PAEDIATRIC AND ADULT HOSPICE SERVICES
Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for all aspec…
Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review
Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of edu…
Testing a Pediatric Palliative Care Education Workplace Intervention
Pediatric palliative care is aimed at pain and symptom management, reducing hospitalization, promoting psychosocial care, and improving quality of life for children with serious illness. As a professional caregiver, nurses play an essential role in the provisi…
The BOOST paediatric advance care planning intervention for adolescents with cancer and their parents: development, acceptability and feasibility
BACKGROUND: Although advance care planning (ACP) has been widely recommended to support patient and family engagement in understanding the patient's values, preferences and goals of care, there are only a few models in paediatric oncology that capture ACP as a…
The Child With Severe Chronic Illness in the ICU: A Concise Review
OBJECTIVES: Children with severe chronic illness are a prevalent, impactful, vulnerable group in PICUs, whose needs are insufficiently met by transitory care models and a narrow focus on acute care needs. Thus, we sought to provide a concise synthetic review o…
The COVID-19 Pandemic: Early Ripple Effects in Pediatric Palliative Care
Palliative care, which aims to provide comprehensive, interdisciplinary, holistic care to children, adolescents and adults with life-threatening, and ultimately life-limiting conditions, is a discipline that has emerged as an integral component of healthcare s…
The Design of a Data Management System for a Multicenter Palliative Care Cohort Study
Context. Prospective cohort studies of individuals with serious illness and their family members, such as children receiving palliative care and their parents, pose challenges regarding data management. Objective. To describe the design and lessons learned reg…
The DIGNITAL Study
Background: Dignity Therapy (DT) is a validated psycho-therapeutic intervention designed to influence a sense of meaning and purpose for individuals and their families. DT is well received by patients and family members, with research identifying improvements …
The do-not-resuscitate-like (DNRL) order, a medical directive for limiting life-sustaining treatment in the end-of-life care of children with cancer: experience of major cancer center in Brazil
PURPOSE: In the last few decades, interest in palliative care and advance care planning has grown in Brazil and worldwide. Empirical studies are needed to reduce therapeutic obstinacy and medical futility in the end-of-life care of children with incurable canc…
The Dutch Multidisciplinary Clinical Practice Guideline for Pediatric Palliative Care
Background and Aims: Pediatric palliative care is concerned with relief of suffering of all children with a life threatening disease and their families in all domains (physical, psychological, social and spiritual). This includes pediatric oncology patients. I…
The experience and perceptions of siblings of pediatric intensive care unit patients: A qualitative study
Over 200,000 patients are admitted into pediatric intensive care units (PICU) annually in North America, exposing families to extreme psychosocial stressors and adverse outcomes. While previous research has shown PICU patients and their parents experience post…
The experiences of parents of children in pediatric palliative care: A qualitative study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care.
DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 m…
The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff
Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequ…
The Fraught Notion of a "Good Death" in Pediatrics
In this article, I sort through some of the confusion surrounding what constitutes the controversial notion of a "good death" for children. I distinguish, first, between metaphysical and practical disagreements about the notion of a good death, and, second, be…
The Gift of Life: Interprofessional Organ Donation Curriculum in Pediatric Critical Care
BACKGROUND: The number of patients awaiting organ transplantation is high, particularly in Pediatrics, in which available organs are scarce. To maximize organ donation opportunities and to provide quality end-of-life care, clinicians from all professions must …
The health of mothers of children with a life-limiting condition: A qualitative interview study
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely expl…
The Impact of Caring for Children With Severe Neurological Impairment on Clinicians
Clinicians face many challenges in caring for children with severe neurological impairment (SNI). This study aimed to understand expert clinician perspectives on the personal impact of caring for children with SNI to highlight the challenges and potential solu…
The Impact of COVID-19 on Palliative Care for Children Within the UK
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
The Intervention Areas of the Psychologist in Pediatric Palliative Care: A Retrospective Analysis
Infants, children and adolescents with life-limiting and life-threatening disease need long-term care that may change according to disease's natural history. With the primary goal of quality of life, the psychologist of pediatric palliative care (PPC) network …
The loss of a child, bereavement and the search for meaning: A systematic review of the most recent parental interventions
The loss of a child is considered one of the most tragic experiences that parents can go through. The present systematic review aims to compile the most recently published interventions in bereavement support for these parents, being particularly interested in…
The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses
BACKGROUND: This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses. METHOD(S): The research started with a sco…