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 451–475 of 4332 publications
Enhancing Community Education on Family Caregiver Well-being Through Partnership
Family caregivers of children with medical complexity (CMC) provide intensive medical care and coordination for their child and experience higher rates of anxiety, depression, and posttraumatic stress than their peers.1,2 CMC are children with complex chronic …
Epidemiology of inpatient paediatric mortalities from 2011 to 2020: A single centre study
Aims: Studying the changing circumstances of inpatient paediatric deaths can support resource allocation, staff training, and palliative care development. This study aims to describe the location, mode of death and the use of palliative care and advanced care …
Equipping Educational Therapists for Pediatric Palliative Care (PPC): A Holistic Approach to Support Terminally-Ill Children
As more and more educational therapists (ETs) have been increasingly encountering terminally-ill or life-limited children in their practice, the need for training and involvement in Pediatric Palliative Care (PPC) has become more pressing. The author of this p…
Establishing a Neonatal Palliative Care Program in a Tertiary Level Neonatal Intensive Care Unit
Objectives
To describe the planning and implementation of the neonatal palliative care (NPC) program in the neonatal intensive care unit (NICU) in a major referral hospital in western India.
Methods
The authors describe the neonatal characteristics, component…
Ethical challenges and justice concerns for infants and children with life-limiting conditions and significant disability, including trisomy 13 and 18
Abstract
Some life-limiting conditions associated with significant neurodevelopmental impairment, such as trisomy 13/18, have historically been considered lethal, thus medical or surgical treatments would be inappropriate. Evolving literature has shown that ea…
Ethical Challenges in Neonatal Life Support
Advancements in neonatal intensive care have dramatically improved survival of extremely preterm and critically ill newborns while
simultaneously intensifying ethical dilemmas surrounding futility, parental authority, best interests of the child, and resource …
Ethical, legal, and social aspects of health technologies for home-based paediatric palliative care - a systematic review
Background: Home-based health technologies for paediatric palliative care have great potential to improve care for children, caregivers, healthcare professionals, and health systems. However, no systematic reviews have directly addressed the intersections amon…
Ethics and end-of-life in pediatric and neonatal ICUs: a systematic review of recommendations
Background: Working in neonatal intensive care units (NICUs) or pediatric intensive care units (PICUs) entails making difficult decisions about children at the end of their lives that raise significant ethical issues. This review identified the ethical content…
"Even though it is difficult, …, is truly worth everything": A qualitative study on pediatric nurses' end of life care experiences
Purpose: This study explores the end-of-life care experiences of pediatric nurses in Turkey.
Method: This study was conducted using the phenomenology design, one of the qualitative research designs. A total of 20 nurses participated in the study, which utiliz…
Evidence for Impact: Evaluating Core Treatment Goals in Pediatric Palliative Inpatient Care
Background: In light of the increasing importance of measuring, assuring, and improving the quality of care, this study aimed to evaluate the outcome of care provided at a specialized inpatient PPC unit in consideration of the three PPC core treatment goals: (…
Evolving Models of Community-Based Pediatric Palliative Care in Eight Countries Across Latin America
Context: High-quality pediatric palliative care is best achieved through a comprehensive interdisciplinary effort that actively involves the family and engages resources within the community. Community-based palliative care specifically strives to incorporate …
Experience-based co-design informed development of a toolbox to help optimise primary care support during transition from children's hospice care: HOPSCOTCH study protocol
ntroduction: The HOPSCOTCH study 'Helping Optimise Primary Care Support During Transition From Children's Hospice Care' aims to develop a toolbox to enable engagement of primary care services in the care of young people with life-limiting conditions (LLC) with…
Experience of Families During Admission of Their Minors to a Paediatric Intensive Care Unit: A Phenomenological Study
Background
Being admitted to a paediatric intensive care unit is a stressful situation for the minor and their family, causing emotional alterations that generate changes in psychological, physical and social aspects, as well as on how to take care of the mino…
Experiences and challenges in perinatal palliative care: a qualitative study among parents and healthcare providers in regional and tertiary hospitals
Background: Perinatal palliative care (PPC) is increasingly recognized as an essential component of quality maternity and neonatal care. Despite international calls for structured programs, little is known about how PPC is provided in everyday healthcare syste…
Experiences of bereaved parents with no surviving children in Ireland: Parents’ and professionals’ perspectives
Bereavement experiences of parents with no surviving children are rarely researched. This qualitative study, conducted in Ireland, and informed by the continuing bonds model, used semi-structured interviews to explore the experiences of six parents with no sur…
Experiences of Family Caregivers of Children Aged 1-23 Months Who Have Received Pediatric Palliative Care: A Systematic Review With Qualitative Metasynthesis
Introduction: Family caregivers of children receiving pediatric palliative care (PPC) play a crucial role in their care and wellbeing, especially during the early stages of life.
Objective: To explore the experience of family caregivers of children aged 1-23 …
Experiences of pregnancy loss in fathers of existing children: A qualitative study
This study explores the experiences of fathers of existing children following pregnancy loss. Participants were 12 Israeli men who experienced pregnancy loss and had other children at the time. Semi-structured interviews were conducted. Four themes were genera…
Exploration of the projection into the future of twins who have experienced their double's disease and bereavement using the person picking an apple from a tree drawing
Objective
Few studies have been carried out in the field of pediatric palliative care concerning the experience of siblings, especially of twins. While some research has highlighted the impact of a child's disease and bereavement on his or her siblings, to our…
Exploring how claims of 'suffering' are operationalized in pediatric critical care
Context: Identifying when a child is suffering can be incredibly challenging. Understanding how the term 'suffering' is used in pediatric critical care - and specifically end of life care - is critical for clinical decision-making, communication, and goal-sett…
Exploring how 'wish-granting' interventions foster wellbeing for children with life-threatening health conditions and their families: A qualitative study
Wish-granting is a form of positive psychological intervention that seeks to promote child wellbeing by fulfilling a wish of their choice. This study aimed to explore families' experiences of receiving wish-granting interventions to understand how wishes impac…
Exploring Pediatric Oncology Care Practices Influencing the Relationships Among Children, Caregivers, and Health Care Providers: A Multi-Institutional Study From Pakistan
The quality of relationships between health care professionals (HCPs) and patients is an important factor influencing people's experiences with their health systems. In Pakistan, pediatric oncologists highlight the need for effective communication to support r…
Exploring pediatric palliative care in Luxembourg: a mixed-methods study
Background: An estimated 170,000 children in the WHO European Region have no access to palliative care annually. In Luxembourg, there is a lack of data on children needing palliative care, and the existing structure appears limited. This study aims to assess t…
Exploring the experiences of neonatal parents for neonatal palliative care: a meta-synthesis of qualitative research
Background: Neonatal palliative care (NPC) represents a deeply emotional and ethically complex experience for families confronting the anticipated or actual loss of an infant. Although the clinical dimensions of NPC are increasingly acknowledged, there remains…
Exploring the viability of telehealth integration into specialised paediatric palliative care
Background: Specialised outpatient paediatric palliative care (SOPPC) is vital for young people with life-limiting conditions and telehealth integration might improve this care.
Aim: Evaluate the acceptance and challenges of implementing teleconsultations amo…