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:
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…
While the underlying principles are the same, there are differences in practice in end of life decisions and care for extremely preterm infants compared with other newborns and older children. In this paper, we review end of life care for extremely…
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical…
Since 2005, forgoing live-support (FLS) is allowed by the French law (known as the Leonetti law) for end-of-life patients only. This study aims at describing the variations over time in the use of the following methods to end life: FLS, brain death…
BACKGROUND: The management of children with cancer during the end-of-life (EOL) period is often difficult and requires skilled medical professionals. Patients with tumors of the central nervous system (CNS) with relapse or disease progression might…
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…
BACKGROUND: Children's hospices are a key provider of palliative care for children and young people with life-limiting and life-threatening conditions. However, despite recent policy attention to the provision of paediatric palliative care, little is…
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and…
It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them.…
BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
BACKGROUND: Adolescent and young adult oncology (AYAO) patients often receive intensive medical care and experience significant symptoms at the end of life (EOL). OBJECTIVE: This study aimed to describe the characteristics of AYAO patients aged 15-26…
BACKGROUND: Education and training for interdisciplinary pediatric providers requires training in principles of palliative and end-of-life (EOL) care. The experiences of bereaved parents can inform and enhance palliative care educational curricula in…
BACKGROUND:
Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with…
Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Method(s): We…
OBJECTIVES: This systematic review aimed to determine the content, mode of delivery, assessment, and outcomes of educational interventions to equip health and social care professionals (HSCPs) when delivering end-of-life (EoL) supportive care for…
The article analyses the decision-making process between doctors and parents of babies in neonatal intensive care. In particular, it focuses on cases in which the decision concerns the redirection of care from full intensive care to palliative care…
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by…
OBJECTIVE: To describe how preferences and treatment influence symptoms at end of life and site of death in pediatric cancer. METHODS: We included 61 pediatric palliative patients with cancer whose parents previously participated in a study that…
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.
Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the…
BACKGROUND: Professional education pertaining to end-of-life care with pediatric oncology patients is limited. Pediatric trainees learn about end-of-life conversations largely from the provider's perspective. Bereaved parents can inform the education…
Objectives Among patients successfully resuscitated from out-of-hospital cardiac arrest (OHCA) and admitted to California hospitals, we examined how the placement of a do not resuscitate (DNR) order in the first 24 h after admission was associated…
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the…
OBJECTIVE: To describe medication utilization patterns by pediatric inpatients with cancer during their last week of life. METHODS: This retrospective study used data from the Vizient Clinical Database/Resource Manager, a national compilation of…
Purpose: To assess the feelings and knowledge of health care professionals (HCPs) about gasping in dying patients in neonatal intensive care units (NICUs) and pediatric intensive care units (PICUs). Methods: A 9-item questionnaire addressed to 488…
OBJECTIVES: Palliative sedation (PS) consists of the use of drugs to alleviate the suffering of patients with refractory symptoms, through a reduction in consciousness. The aim of this study is to describe the incidence of and indications for PS in…
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17…
Understanding the significance of rituals at the end-of-life enables health care professionals to offer meaningful and compassionate interventions that enhance quality of life and support those dying and those who grieve. Rituals contribute to the…
AIMS AND OBJECTIVES: To draw out the similar complexities faced by staff around truth-telling in a children's and adult population and to interrogate the dilemmas faced by staff when informal carers act to block truth-telling. BACKGROUND: Policy…
CONTEXT:
The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU)…
BACKGROUND:
Staff who provide end-of-life care to children not only have to deal with their own sense of loss but also that of bereaved families. There is a dearth of knowledge on how they cope with these challenges.
AIM:
The aim of this review is to…
BACKGROUND:
This is the second of a two-part article that discusses a research project that aimed to develop and evaluate a 24/7 symptom-management service for children with palliative care needs and a nursing logic model to enable a novel service…
Context Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. Objective The objective of this study was to assess the effects…
CONTEXT: Specialized pediatric palliative care (SPPC) is increasingly involved in the care of seriously ill children, yet the evidence on its impact has not been comprehensively reviewed. OBJECTIVE(S): To assess the effects of providing SPPC to…
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured…
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in…
