Browse Items (385 total)

Objectives
Describe the role of pediatric palliative care
consultation in the neonatal intensive care unit
(NICU) setting.
Describe parent experiences with a pediatric palliative
care consultation in the NICU and implications
for practice and…

AIM: Spinal muscular atrophy (SMA) type 1 is a relatively common, untreatable and invariably fatal neuromuscular disorder of early childhood. Psychosocial care is vital in management of families affected by this disease. There are few studies…

The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations. In this…

BACKGROUND:
Pediatric advance care planning is advocated by healthcare providers because it may increase the chance that patient and/or parent wishes are respected and thus improve end-of-life care. However, since end-of-life decisions for children…

OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness…

BACKGROUND AND OBJECTIVES: Medical errors are a leading cause of death in the United States. Effective communication and speaking up are crucial factors in patient safety initiatives. We examined the reasons reported by pediatric residents for not…

BACKGROUND:
Evidence on the impact of pediatric palliative care programs (PPCP) on resource utilization is scarce and requires broader measures to include utilization beyond the hospital setting.
OBJECTIVE:
This research aims to provide a Canadian…

Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the…

BACKGROUND:
This study explored psychological adjustment and sibling relationships of siblings of children with life-limiting conditions (LLCs), expanding on previous research by defining LLCs using a systematic classification of these…

Objectives

Define a collaborative model between pediatric palliative care teams and child psychiatry.

Demonstrate knowledge of psychotropic medication use in children with advanced illness.

Recognize when the involvement of child psychiatry is…

OBJECTIVES:
22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations…

Caring for a child with a chronic condition has received considerable attention in the pediatric health literature. Today, approximately 1 out of 5 North American children are diagnosed with a chronic condition that requires parents to become…

Abstract
BACKGROUND:
Pediatrics residents treat patients who are particularly vulnerable and they care for many patients in palliative situations. The purpose of this study was to build a typology detailing the representations of pediatrics and…

PURPOSE:
Termination of pregnancy without feticide (TOPWF) is poorly known in France and far less practiced than palliative care after term birth of a child having a lethal pathology. Few teams consider it and its practice remains confidential. This…

Background: People with CF and their families carry the burden of life-limiting illness. Palliative care enhances quality of life for people with serious and chronic illnesses. Opportunities are numerous to introduce palliative care before patients…

The evidence base underpinning paediatric palliative care (PPC) needs to be expanded and be made robust if advances in practice and reduction in suffering are to be achieved. While current guidance emphasises the need to include children and young…

CONTEXT:
Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement.
OBJECTIVES:
The objective of this study was to compare…

Context: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement.Objectives: The objective of this study was to compare…

Objectives * Compare purposeful and non-purposeful continuing bonds between one and two years post-death. * Compare comforting and discomforting effects of continuing bonds between one and two years post-death. Original Research Background.…

BACKGROUND:
In Canada and other developed countries, the majority of neonatal deaths occur in tertiary neonatal intensive care units. Most deaths occur following the withdrawal of life-sustaining treatments.
AIM:
To explore neonatal death events and…

Lesch-Nyhan disease (LND) is a genetic disorder that has characteristic metabolic, neurologic, and behavioral features. There are multiple behavioral problems including impulsivity, aggressiveness, and severe recurrent self-injurious behavior (SIB).…

PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the…

OBJECTIVE: Smith-Lemli-Opitz syndrome (SLOS) is a rare genetic disorder characterized by cholesterol synthesis impairment. A host of physical, developmental, and behavioral presentations are associated with SLOS, many of which have been related with…

In this study we utilized the framework of patient-centered communication to explore the influence of physician gender and physician parental status on (1) physician-parent communication and (2) care of pediatric patients at the end of life (EOL).…

OBJECTIVE: This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services,…

Abstract
Prior to this study the children’s hospice had no evidence base to demonstrate parental satisfaction regarding the allocation of respite care for their child. The study explored the opinion of parents whose children received respite care at…

BACKGROUND:
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this…

Learning Objectives: Pediatric intensivists are often required to practice what has been described as "primary palliative care". This includes providing optimal symptom management, communication and family support for critically ill children with…

BACKGROUND:
Perinatal palliative care (PPC) programs are proliferating nationwide, but little is known about their structure, process, or desired outcomes, to inform future program development.
OBJECTIVE:
To explicate structure, processes, and…

BACKGROUND:
When healthcare professionals or other involved parties prevent eligible patients from entering a trial as a research subject, they are gatekeeping. This phenomenon is a persistent problem in palliative care research and thought to be…

Abstract
The relationship between parents and clinician is critical to the care and treatment of children with life-limiting conditions (LLCs) and life-threatening illnesses (LTIs). This relationship is built and maintained largely in consultations.…
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