If untreated, most children with severe combined immunodeficiency disorder (SCID) will die of complications of infection within the first 2 years of life. Early hematopoietic stem cell transplant (HSCT) is the current standard of care for this…
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…
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose…
Families desire to bring their children home at end of life, and this creates a variety of unique care needs at home. This study analyzed the child and family factors associated with hospice versus home health care use in the last year of life among…
Objective The purpose of this study was to determine the opinions of practising neonatologists regarding the ethical permissibility of unilateral Do Not Attempt Resuscitation (DNAR) decisions in the neonatal intensive care unit.
Background: Hospitalization of a neonate in the neonatal intensive care unit (NICU) can be a stressful event for parents. They need specific information and communication to alleviate their stress, but these parental needs are not met by NICU staff.…
BACKGROUND:
Despite reported challenges encountered by nurses who provide palliative care to children, few researchers have examined this phenomenon from the perspective of nurses who care for children with life-threatening illnesses in pediatric…
Abstract
Objective To describe the opinions of paediatricians who teach resuscitation in Brazil regarding resuscitation practices in the delivery room (DR) of preterm infants with gestational ages of 23–26 weeks.
Purpose: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative…
Background End-of-life care for a child is an emotionally charged experience for pediatric trainees. Objectives Describe the progression of medical trainee experiences with end-of-life care and determine personal/professional experiences that…
The foundational principle of palliative care is to provide comfort, ameliorate symptoms, and offer emotional support when death is inevitable. Advance care planning (ACP) elicits patients' goals for the future. One important result of an ACP…
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,…
Pediatric medicine increasingly has recognized the value of integrating behavioral health in medical care, but this trend has not yet extended to pediatric palliative care. Results from a recent survey of pediatric palliative care programs across the…
Children are at times asked by clinicians or researchers to rate their pain associated with their past, future, or hypothetical experiences. However, little consideration is typically given to the cognitive-developmental requirements of such pain…
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…
Over 11,000 adolescents and young adults (AYA), ages 15-34, die yearly from cancer and other life-threatening conditions. In order provide comprehensive end-of-life (EoL) care, it is recommended that EoL discussions be routine, begin close…
The majority of children whose brain tumors are resistant to treatment, lose their ability to speak and write due to progressive impairment and/or fatigue. Compromised communication can be emotionally devastating for the whole family, as…
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 oncology…
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…
Research on perinatal bereavement services is limited. The aim of the study was to compare the uptake of bereavement support services between two tertiary neonatal units (NNU), and to investigate influencing factors.
Abstract
A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent…
The National Institute of Nursing Research (NINR) has developed pediatric palliative care informational materials for families of children with serious illnesses (http://1.usa.gov/1rHZs45). The fact sheet, family stories, and resource card…
PURPOSE OF REVIEW:
Ethical challenges are commonly encountered when caring for children with life-threatening conditions.
RECENT FINDINGS:
Controversial end-of-life issues, such as physician-assisted death and medical futility, may also arise in…
OBJECTIVE:
Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this…
Psychological symptoms ranging from distress to more debilitating depression and anxiety with worsening somatic symptoms can hamper communication, particularly at the end-of-life. Treatment with psychotropic medications may be useful for…
Significant changes are occurring in Canada's health care system regarding physician-hastened death (PHD). In the Netherlands, where the Groningen Protocol is in place, euthanasia in now legal for infants and children. The present article considers…
OBJECTIVES:
To test the ability of palliative care screening criteria to improve access to palliative care services in the PICU and examine the association between palliative care team involvement and ICU and hospital length of…
Newborn screening has evolved to include an increasingly complex spectrum of diseases, raising concerns that screening should be optional and require parental consent. Early detection of disorders like PKU and MCAD is essential to prevent serious…
OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings…
The sudden or anticipated death of a child is one of the most challenging and unique experiences that children's nursing students will encounter in practice. There is evidence to suggest that the effect this can have on a practitioner can affect…
BACKGROUND:
To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥8days was the…
We conducted a survey-based study of the opinions, attitudes, and management practices of neonatologists across the United States regarding prenatally diagnosed Trisomy 18. The survey was designed based on previously validated surveys of severe fetal…
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…
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…
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…
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…
BACKGROUND:
An order protocol for distress (OPD), including respiratory distress and acute pain crisis, has been established for pediatric palliative care patients at Sainte-Justine Hospital (SJH). After discussion with the patient/his or her family,…
