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 3126–3150 of 4332 publications
"As if Nothing Happened": Experiences of Bereaved Parents in Romania
Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very hi…
A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple…
Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children’s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children …
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethic…
Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains …
Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children
PURPOSE: This study aimed (1) to examine the current status of psychological distress experienced by neonatal intensive care unit (NICU) nurses in supporting bereaved families, (2) to identify the factors associated with psychological distress, and (3) to unde…
A survey demonstrates limited palliative care structures in paediatric nephrology from the perspective of a multidisciplinary healthcare team
AIM: Children and adolescents with end stage renal disease face a high morbidity and mortality. Palliative care provides a multidisciplinary approach to reduce disease burden and improve quality of life. This study evaluated concepts and current structures of …
A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for arti…
A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advan…
Attitude of the medical personnel of a pediatrics department towards patient death
Introduction: Tertiary care hospitals' physicians require high emotional competence, since they are faced with the demands of terminally ill patients and their families. Objective: to assess the attitude of physicians of a pediatrics department towards patient…
Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children with Advanced Cancer
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better unders…
Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We conducted a nat…
Awareness of pediatric palliative care among health care workers
Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers pr…
Barriers and facilitators to the implementation of a paediatric palliative care team
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, …
Barriers to accessing palliative care for pediatric patients with cancer
Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is…
Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care: an exploratory survey
We recently administered a survey to investigate the prescribing of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care in the UK.
Becoming a Team: The Nature of the Parent-Healthcare Provider Relationship when a Child is Dying in the Pediatric Intensive Care Unit
PURPOSE: To explore bereaved parents' perspectives of parent and staff roles in the pediatric intensive care unit when their child was dying, and their relationships with healthcare staff during this time. DESIGN AND METHODS: Constructivist grounded theory was…
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at…
Bereaved mothers' and fathers' perceptions of a legacy intervention for parents of infants in the NICU
BACKGROUND: Legacy-making, actions or behaviors aimed at being remembered, may be one strategy to enhance coping and improve grief outcomes for bereaved parents and siblings. While legacy interventions have been developed and tested in pediatric and adult popu…
Bereaved parents' experiences of research participation
Background
As understandings of the impacts of end-of-life experiences on parents’ grief and bereavement increase, so too does the inclusion of bereaved parents into research studies exploring these experiences. However, designing and obtaining approval for th…
Bereaved Parents More Satisfied With the Care Given to Their Child With Severe Spinal Muscular Atrophy Than Nonbereaved
BACKGROUND AND AIMS:: Children with severe spinal muscular atrophy have complex care needs due to progressive muscle weakness, eventually leading to respiratory failure. To design a care system adapted to families' needs, more knowledge about parents' experien…
Bereavement follow-up: Listening and learning
Aims & Objectives: Providing family focussed care through lessons learned from bereavement follow-up. Methods RMCH is a tertiary PICU in UK with 750 admissions annually. Families of all patients who die in PICU are offered bereavement follow-up at 6-8 weeks. T…
Bittersweet: a qualitative exploration of mothers' experiences of raising a single surviving twin
Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after…
Brazilian Neonatal Nurses' Palliative Care Experiences
The purpose of palliative care (PC) is to minimize suffering and improve quality of life. Although PC has been well studied, the experience of neonatal intensive care unit (NICU) nurses in Brazil, where little PC training is provided, requires further investig…
Bringing social context into the conversation about pediatric long-term ventilation
Decisions to initiate long-term ventilation (LTV) for children with medical complexities often involve unclear risk/benefit ratios. Although the technology may prolong a child's life, the added months to years could largely be spent in the hospital, a long-ter…