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 401–425 of 4332 publications
Cooling facilities in paediatric palliative care: a ritual form of mourning? A scoping literature review
Parental grief is often found to be more intense and prolonged than other types of loss. Cooling facilities such as air-conditioned rooms or cold cots can allow parents to spend more time with their child by slowing the body’s decomposition. Similar to other b…
Coordinating children's palliative care in municipalities: a qualitative study
Background: Children with palliative care conditions and their families have complex care needs. In Norwegian municipalities, designated coordinators facilitate cooperation between health and social care services to ensure a holistic approach to meeting these …
Coping strategies of nurses caring for children with life-limiting and life-threatening conditions: An integrative review
Introduction: Nurses care for children with life-limiting and life-threatening conditions across a variety of settings, often managing complex needs and unpredictable illness trajectories. As key providers of physical and emotional support to the child and fam…
Coregulatory Responsive Strategies in Bereaved Parents
With growing evidence to support family-oriented coping in grief, more studies have sought to understand how bereaved parents constructively support one another through their shared loss and have examined potential barriers bereaved parent couples face in doin…
Cross-sectional study of the perceived well-being of children in palliative care
Abstract
Objective: To describe the perceived wellbeing (pWB) and the psychological characteristics of young people with life-limiting and life-threatening conditions (LLTCs).
Methods: We conducted a cross-sectional study in young people aged 8 years or older…
Cultural and Spiritual Approaches to Infant Death in Palliative Care: A Systematic Review
Supporting families coping with the loss of a child is a challenge in an
increasingly culturally diverse world. This systematic review, conducted using
the PRISMA methodology and covering the period from 2018 to 2022, analyzed
30 articles identifi ed in Web of…
Culturally and linguistically diverse men’s grief experiences following perinatal death in Australia
To explore the grief experiences of men from culturally and linguistically diverse (CALD) backgrounds following perinatal death in Australia. Qualitative analysis of interview data using thematic analysis. Participants were health service providers (n = 6), an…
Cultural or Spiritual End-of-Life Practice Preference Assessment and Documentation: Identifying Current Practice in Pediatric Hospice
Communities use rituals at end of life to foster a peaceful death, ensure passage to the afterlife, and grieve their lost loved ones. Studies report fear of misunderstanding or impeding rituals as a barrier to accepting hospice care. However, there has been li…
Cultural, Religious, and Spiritual Influences on Communication in Pediatric Palliative Care: A Narrative Review Focused on Children with Severe Neurological Conditions
Pediatric palliative care (PPC) aims to enhance the quality of life of children with life-limiting conditions and their families through individualized, interdisciplinary support. Among this population, children with neurological diseases represent a substanti…
Culture Humility: Supporting Families With Limited English Proficiency in Pediatric Palliative Care
Describe the impact of integrating in-person medical interpreters within the interdisciplinary framework of palliative care to support the development of a personalized care plan for non-English speaking families with complex goals of care. For non-English spe…
Current Practices and Perspectives of Pediatric Palliative Care Workers in South Korea
Purpose: This study explored current pediatric palliative care (PPC) in South Korea and suggests future directions based on the perspectives of full-time PPC workers. Methods: A mixed-methods secondary analysis was conducted using survey data from nurses and s…
Death One Hour After Terminal Extubation in Children: Validation of a Machine Learning Model to Predict Cardiac Death After Withdrawal of Life-Sustaining Treatment in a Multicenter Cohort, 2009-2021
Objectives: In the PICU, predicting death within 1 hour after terminal extubation (TE) is valuable in augmenting family counseling and in identifying suitable candidates for organ donation after circulatory determination of death (DCDD). The objective of this …
Deaths among children with life-limiting or life-threatening conditions in Wales: a full population cohort
Objectives: To describe trends in demographic and clinical characteristics of children with a life-limiting condition (LLC) who died in Wales.
Methods: Linked full population cohort observational study of all children and young people (CYP) aged 0-25 years ol…
Death talk and access gaps: applying a personalist lens to address inequities for children with complex conditions at the end of life
Children with complex care needs lack access to Specialized Pediatric Palliative care in Canada. At the same time, death is increasingly being handled in a mechanized and specialized manner, with hospitals becoming the expected place for death to occur. Althou…
Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review
Abstract
Background
Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is oft…
Describing the Impact of Physician End-of-Life Communication Training on Simulated Stress Using a Novel Stress Marker
Introduction Empathetic end-of-life (EOL) communication is important for high quality pediatric patient and family outcomes. Trainees may have limited exposure and training in caring for patients at EOL which may impact communication-related stress. This study…
Descriptive study on nurses' coping with the death of a pediatric patient
Introduction
According to several studies, nurses feel that they are not prepared to face the death of a patient, especially when the patient is paediatric.
Objective
To describe the level of coping of nurses in various departments of a paediatric monographic …
Design, Implementation, and Evaluation of a Multidisciplinary Palliative Care Curriculum for Obstetrician Gynecologist Residents
Abstract: Palliative care focuses on providing relief from the stress and symptoms of serious illness. Obstetrician gynecologists (OBGYNs) manage a variety of complex clinical situations ranging from delivering a cancer diagnosis to caring for a neonatal demis…
Designing and maturing the OKRA-Compass for breaking bad news in the German pediatric oncology setting: A participatory action research study
Objective: Breaking Bad News (BBN) is challenging in pediatric oncology. It requires tailored, sensitive communication to families and children at critical moments. However, pediatric oncology lacks context-specific BBN support tools. The OKRA project aims to …
Developing and adapting the Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum for Aotearoa (New Zealand)
Pediatric Palliative Care provision is currently inequitable for tamariki (children) with serious illness, and their whānau in Aotearoa New Zealand. A lack of access to education for health professionals has long been identified as a barrier to implementing qu…
Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care
Background: To achieve benefits of person-centred outcome measures within routine children's palliative care, implementation plans and the intended pathways to impact must be established.
Aim: To develop a Theory of Change and Implementation Plan for sustaine…
Developing multi-perspective practice-based evidence theses for breaking bad news in the German pediatric oncology: A participatory group Delphi study
Objectives: The study aimed to (1) gain a comprehensive, multi-perspective understanding of the preparation, transmission and follow-up of Breaking Bad News (BBN) in pediatric oncology, and (2) to develop and weigh recommendations for BBN in pediatric oncology…
Development and results of perinatal palliative care program: a retrospective cohort study
Purpose
From September 2014 to April 2016, the project “Let me be” was carried out by Gajusz Foundation. We aimed to inform clinical practice by describing a model of perinatal palliative care and to determine who is referred for care, what happens after refer…
Development of an Evaluation Tool for Monitoring the Delivery of Psychosocial Care in Pediatric Oncology Settings
In January of 2019, the University of Iowa Stead Family Children's Hospital (UI SFCH) formalized their Pediatric Psychosocial Oncology Program by utilizing 15 evidence-based Standards for Psychosocial Care for Children with Cancer and Families as a foundation …