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 4276–4300 of 4332 publications
Fathers' experiences in the neonatal intensive care unit: a search for control.
OBJECTIVE: This qualitative study aimed at understanding the experiences of fathers of very ill neonates in the NICU., METHODS: Sixteen fathers of very ill and/or very preterm infants who had been in the NICU for >30 days were interviewed by a male physician. …
[IMPaCCT: standards of paediatric palliative care]
The needs of children and families living with life-limiting and life-threatening illness are similar across all European countries. Meeting these needs requires a comprehensive and integrative approach, with the input of a skilled multidisciplinary paediatric…
Interventions for noisy breathing in patients near to death
BACKGROUND: Noisy breathing (death rattle) occurs in 23 to 92% of people who are dying. The cause of death rattle remains unproven but is presumed to be due to an accumulation of secretions in the airways. It is therefore managed physically (repositioning and …
Use of patient-controlled analgesia for pain control in dying children
BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.
MATERIALS AND ME…
A qualitative investigation of fathers' experiences of looking after a child with a life-limiting illness, in process and in retrospect
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon…
Neonatal euthanasia is unsupportable: the Groningen protocol should be abandoned
The growing support for voluntary active euthanasia (VAE) is evident in the recently approved Dutch Law on Termination of Life on Request. Indeed, the debate over legalized VAE has increased in European countries, the United States, and many other nations over…
Patient-reported outcomes in end-of-life research in pediatric oncology
OBJECTIVE: The purpose of this review of published literature was to identify the number and focus of empirically based papers that included research methods used to directly solicit patient-reported outcomes (PRO) from pediatric oncology patients at end of li…
Consultation of parents in actual end-of-life decision-making in neonates and infants
The objective of this study was to assess how frequently end-of-life decisions (ELDs) with a possible or certain life-shortening effect in neonates and infants were discussed with parents, and to determine if consultation of parents was associated with the typ…
The use of drugs with a life-shortening effect in end-of-life care in neonates and infants
OBJECTIVE: The purpose was to describe the use of drugs with a possible or certain life-shortening effect in end-of-life care in infants and to evaluate the possibly lethal effect.
DESIGN: For 292/298 deaths of live born infants (<1 year), in a 1-year period (…
Key factors affecting dying children and their families
The death of a child alters the life and health of others immediately and for the rest of their lives. How a child dies influences parents' abilities to continue their role functions as well as siblings' abilities to make and maintain friendships, and may be t…
The needs of children with life-limiting conditions: a healthcare-provider-based model
Pediatric hospice and palliative care has progressed in recent years with the development of new programs and models of care. Missing from the empirical literature, however is a model of the needs of children. The purpose of the present study was to develop an…
A study into the educational needs of children's hospice doctors: a descriptive quantitative and qualitative survey
OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice doctors (n =55) in Engl…
End-of-life research as a priority for pediatric oncology
Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer …
Human suffering: the need for relationship-based research in pediatric end-of-life care
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand …
Integrating palliative care in pediatrics
An integrated palliative care plan with goals of therapy that change throughout a child's illness will reflect an individualized, child-centered, and family-centered approach to care. This care plan will act as a foundation to assist and guide all providers, f…
Pediatric palliative care: A comprehensive model of care for children with life-threatening conditions and their families
The present article reviews aspects unique to pediatric palliative care: the attitudes of medical staff toward pediatric death and life-threatening conditions, distinct patterns of pediatric deaths, the causes of suffering in children with life-threatening con…
A "good" death in a pediatric ICU: Is it possible?
Objectives: In the modern pediatric intensive care unit (PICU) physicians are often faced with the need to interrupt life-sustaining treatment (LST) and to allow children to die when no further treatment options are available. Consequently, the importance of p…
Differences and similarities between mothers' and fathers' experiences of parenting a child with a disability.
This qualitative study used focus groups to identify the differences and similarities in the experiences of parents of children with a disability. Two main themes emerged, showing the ways in which the mothers and fathers are alike or different. One concerns r…
End of life in pediatric oncology: how clinical practice leads to research
In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from clinical research…
Ethical decision making in neonatal units--the normative significance of vitality
This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's energy and vig…
No resuscitation and withdrawal of therapy in a neonatal and a pediatric intensive care unit in Canada
STUDY OBJECTIVE: To compare and contrast the modes of death in a neonatal (NICU) and a pediatric (PICU) intensive care unit., DESIGN: Retrospective analysis of patient records., SUBJECTS: All newborn infants and children (< 17 years of age) who died in the NIC…