Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
BACKGROUND: Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
Cornelia de Lange syndrome (CdLS) is a rare genetic disorder characterized by growth retardation, intellectual disability, limb defects, typical facial dysmorphism, and other systemic involvement. Sleep disturbances have been frequently reported in…
Objective: The purpose of this project was to design, implement, and evaluate a safe sleep program for expectant mothers and the families of infants discharged from our hospital's neonatal intensive care unit (NICU). It was prompted by the…
BACKGROUND:
End-of-life decisions (EoLD) often concern children with profound intellectual and multiple disabilities (PIMD). Yet, little is known about how parents and physicians discuss and make these decisions.
AIMS:
The objective of this research…
BACKGROUND AND AIMS:
The objectives of this integrative review were to understand how parents of children with severe developmental disorders experience their involvement in end-of-life decision-making, how they prefer to be involved and what factors…
Yvonne Dexter, writing in Nursing Children and Young People, discusses the use of storyboarding and its use as a reflective practice aid. As children's nurses are among the child health professionals most directly affected by childhood death,…
OBJECTIVE:
Evaluate changes in end-of-life care following initiation of a palliative care program in a neonatal intensive care unit.
STUDY DESIGN:
Retrospective study comparing infant deaths before and after implementation of a Palliative Care…
Ethical issues in the field of pediatric neurosurgery, including prenatal diagnosis, palliative care for children with an intractable serious disease, and medical neglect, are discussed. An important role of medicine is to offer every possible…
OBJECTIVE:
This paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory.
METHODS:
Grice's Cooperative Principle and associated maxims, which enable…
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the…
Objective: To identify which quality indicators (QI) predict patient satisfaction.
Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal…
BACKGROUND:
Congenital anomalies account for 20% of neonatal and infant deaths in the United States. Perinatal palliative care is a recent addition to palliative care and is meant to meet the needs of families who choose to continue a pregnancy…
Measurement of quality indicators (QIs) in perinatal palliative care has not been addressed. Parents who chose to continue pregnancy after a diagnosis of a life-limiting fetal condition described perceptions of quality care and their satisfaction…
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,…
Objectives
Identify 3 core aspects of development unique to
patients with autism spectrum disorders (ASD).
Describe how developmental differences impact
symptom assessment and pain behaviors in children
with ASD who also have a serious illness.
…
Most children who die in the UK have an underlying chronic illness, and the majority of these deaths take place in a paediatric intensive care unit (PICU).1 The overall community burden of paediatric chronic illness is increasing as the population…
Severe congenital hydrocephalus manifests as accumulation of a large amount of excess fluid in the brain. It is a paradigmatic example of a condition in which diagnosis is relatively straightforward and long-term survival is usually associated with…
BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…
Background
There are identified gaps in the care provided to children with cancer based on the self-identified lack of education for health care professionals in pediatric palliative care and in the perceptions of bereaved parents who describe…
Objectives: As a follow-up to a study conducted in 2002,
our objective was to obtain an accurate description of
programs that provided specialized pediatric palliative
care (PPC) in 2012 and the children who received it;
explore changes in the…
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized…
Objectives
Determine feasibility of a communication skills
training (CST) to prepare pediatric intensivists
for communicating bad news and assessing goals
of care in the pediatric intensive care unit
(PICU).
Describe the impact of CST on…
A good palliative care service is responsive, available to families where they want it, provided round the clock, and co-ordinated by a lead healthcare professional or team. This is the view of one hospice director of care in response to a draft good…
Objectives
Summarize the current state of our understanding
of spiritual needs of children facing lifethreatening
illness.
Learn basic skills for being a spiritual generalist
and how to begin exploring spiritual needs of
children facing…
Palliative Care (PC), is the set of actions and tools that seek relief from symptoms and suffering of patients and their families to diseases that threaten their lives. This support includes different types of resources covering the clinical,…
Objectives
Explain the rationale for a full-time physician as a
member of a home hospice team.
Describe the outcomes of an effort to put physicians
on home hospice teams.
Describe barriers to implementation.
Vol. 51 No. 2 February 2016 Schedule…
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures…
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and…
Children and young people can have a wide range of life limiting conditions and may sometimes live with such conditions for many years. This guideline recommends that end of life care be managed as a long term process that begins at the time of…
The use of compassionate extubation (CE) to alleviate suffering by terminating mechanical ventilation and withdrawing the endotracheal tube requires professional adherence and efficiency. The Hospice Palliative Care Act, amended on…
Children diagnosed with diffuse intrinsic pontine glioma (DIPG) face a dismal prognosis, with severe neurologic deterioration and inevitable death at a median of 9 months from diagnosis. Steroids are widely prescribed as supportive or palliative…
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
Identify the diagnoses and death rate found in an
outpatient pediatric palliative care clinic.
Describe the technology and community supports
used by children with medical complexity and
incurable illness.
Original Research Background.…
OBJECTIVES: A systematic review was conducted to (1) investigate couple functioning after a pediatric cancer diagnosis and (2) examine theoretical and methodological tendencies and issues in this literature. METHODS: Searches of Web of Science,…
As life expectancy grows, the death of an adult child becomes a highly prevalent problem for older adults. The present study is based on nine interviews and explores the experience of parents (≥70 years) outliving an adult child. The bereaved parents…
Stem cell transplantation (SCT) is an intensive therapy offering the possibility of cure for life-threatening conditions but with risk of serious complications and death. Outcomes associated with pediatric palliative care (PPC) for children who…
