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 3426–3450 of 4332 publications
The aggressive end-of-life care in pediatric cancer patients in taiwan
Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively explored in th…
The codesign of an interdisciplinary team-based intervention regarding initiating palliative care in pediatric oncology
Purpose: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on p…
The competence of families in paediatric palliative care
In general, a huge number of different actors and caregivers are involved in pediatric palliative care and in particular when a child has multiple disabilities. While each actor has an area of competence, that of the family is the most difficult to make exist …
The Effects of Interprofessional Pediatric End-of-Life Simulation on Communication and Role Understanding in Health Professions Students
The purpose of this study was to analyze the impact of interprofessional pediatric end-of life simulations for health professions students. A quasiexperimental design was used with three TeamSTEPPS(R) tools. Forty-one students were enrolled (nursing = 20, medi…
The enactment stage of end-of-life decision-making for children
OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactm…
The engagement of young people in their own advance care planning process: A systematic narrative synthesis
Background:An increasing number of young people are living with life-limiting conditions. Current research about advance care planning for young people indicates differing experiences for those involved. Understanding how far young people are engaged in their …
The experiences, attitudes and practices of nurses working in a paediatric intensive care unit caring for babies and children at the end of life: A qualitative study
Introduction Of the 74% of UK childhood deaths that occur in hospital, an increasing number-up to 65%-occur in PICU. There is little information about the impact of this on those who provide minute-to minute care of the children and their families, the bedside…
The Impact of Music Therapy in Paediatric Palliative Care in Residential Hospice
Background: Emily's House Children's Hospice (EH) located in Toronto, Canada provides residential hospice services to children living with serious medical conditions. The use of music therapy to ameliorate anxiety and pain is well documented in paediatric pati…
The impact of palliative care on health status in HIV-positive children
HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after initiation o…
The Impact of Pediatric Palliative Care Involvement in the Care of Critically Ill Patients without Complex Chronic Conditions
BACKGROUND: The impact of pediatric palliative care (PPC) is well established for children with chronic complex diseases. However, PPC likely also benefits previously healthy children with acute life-threatening conditions. OBJECTIVE: To determine the incidenc…
The impact of stillbirth on bereaved parents: A qualitative study
PURPOSE: To explore the lived experiences and personal impact of stillbirth on bereaved parents. METHODS: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born foll…
The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU
OBJECTIVES: Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents' initial mourning process. This study explores what interaction with hospita…
The integration of palliative care in Dr Congo "a Model of Sustainability": A field study
Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deteriorationofthe health system and the absenceof a well-defined national pol…
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are ofte…
The last 2 years of life for children with severe physical disability: Observations from a tertiary paediatric centre
AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether …
The lived experiences of nurses caring for patients at the end of life in clinical settings
Abstract. Background: End-of-life care has become the focus of most health care organizations due to the increasing number of patients who are living longer with chronic and terminal diseases. Today, patients are more involved in the discussion towards end-of-…
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe …
The Pepi-Pod study: Overnight video, oximetry and thermal environment while using an in-bed sleep device for sudden unexpected death in infancy prevention
AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous Maori mothe…
The practice of mutual protection in the care of children with palliative care needs: A multiple qualitative case study approach from Jordan
PURPOSE: This study explores the experience of disclosing critical information in the care of children with palliative care needs, from the perspective of physicians, nurses, and mothers in Jordan. DESIGN AND METHODS: This study employed a qualitative case stu…
The Quality of Life of Children with Advanced Cancer: The Perspective of Children and Parents
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little empirical d…
The Relationship Between Household Income and Patient-Reported Symptom Distress and Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study
Background: Children with advanced cancer experience high symptom distress, which negatively impacts their health-related quality of life (HRQOL). To the authors' knowledge, the relationship between income and symptom distress and HRQOL is not well described. …
The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study
Aims and objectives To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years, increasing numbers…