Browse Items (34 total)

BACKGROUND: Death of a child in the Paediatric Intensive Care Unit is a rare event that can occur after failed cardiopulmonary resuscitation efforts, after a brain death diagnosis, or after a decision to limit therapeutic efforts. Nevertheless, even…

Background Memory making is the process of creating mementos of a child with a life-limiting condition, who may be at or near end of life, providing a tangible and visual connection to the child who has died. Acorns memory making work already…

The World Health Organization describes paediatric palliative care (PPC) as the active total care of the child's body, mind and spirit and supporting their family.1 It should be established as early as possible and continued along the entire disease…

BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents…

Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited…

The debate on limiting futile therapy in the aspect of End of Life (EoL) care has been going on in Poland over the last decade. The growing demand for EoL care resulting from the aging of societies corresponds to the expectation of a satisfactory…

PURPOSE: Patient empowerment may be particularly important in children and young people (CYP) with CF, due to high treatment burden and limited peer support opportunities. This review aimed to meta-synthesize the qualitative literature pertaining to…

Background The hospice recognised a gap in services for patients, relatives and carers aged 18-30 and that services should be more age appropriate (Smith, Mooney, Cable, & Taylor (eds.). Teenage Cancer Trust, 2016). In addition, young people are…

Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J…

Background and Aims: Transition to palliative care (PC) is a critical aspect of pediatric oncology requiring a high level of communication skills from doctors, which could be best judged by parents of children died in cancer. Our aim was to explore…

Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative…

The purpose of this article is to explore factors that influence pediatric patients and their parents during provider-led goals-of-care conversations. Our framework can help providers enhance holistic communication by approaching difficult topics…

Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving…

CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and…

Background More young people with complex life-limiting conditions are living into adulthood, generating greater demand for appropriate care (Fraser, Gibson-Smith, Jarvis, et al., 2021. Palliat Med. 35:1641). We implemented Project ECHO (Extension of…

To investigate any association between expressions of parents' continuing bond with their stillborn baby and bereavement adaptation. Continuing bonds theory suggests that bereaved parents adapt to the loss of their child by sharing and transforming…

INTRODUCTION: Paediatric palliative care (PPC) is care for children with life-threatening or life-limiting conditions, and can involve complex high-tech care, which can last for months or years. In 2015, the National Individual Care Plan (ICP) for…

When working on an ethnographic study into communication between children and health professionals about their cancer, the researcher witnessed an event that seemed to capture the often-invisible emotional challenges associated with such work (Bryan…

BACKGROUND: For terminally sick neonates and their families, it's crucial to provide holistic nursing care that incorporates both curative and palliative care as much as feasible. It is well known that the biggest obstacle to delivering palliative…

Background The transition process from paediatric to adult hospice care is uniquely challenging for young adults living with non-malignant life-limiting conditions as they are often declining in health with increasing dependence on their families for…

Although medicolegal challenges to the use of neurologic criteria to declare death in the USA have been well-described, the management of court cases in the United Kingdom about objections to the use of neurologic criteria to declare death has not…

There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care.…

Abstract
The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early…

Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures…

After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making…

Many nurses experience difficulties in pediatric palliative care practice. The study aimed to describe the current situation and structure of pediatric palliative and end-of-life care nursing practices for children and their families in Japan. The…

Background Estimating the local population needs for children's palliative care services can prove challenging. Data has shown that most children die in hospital and not all children with life-limiting conditions (LLC) are known to local hospices at…

Introduction: Patients under palliative home care have special needs for their end-of-life support, which in general does not automatically include cardiopulmonary resuscitation. However, emergency medical services (EMS) respond to emergencies in…

Given that pediatric concurrent hospice care has been available for more than a decade, it is appropriate to seek an understanding of the value of this care delivery approach. Value is the cost associated with achieving beneficial health outcomes. In…

Background: Families who must decide about pediatric home ventilation rely on the clinicians who counsel them for guidance. Most studies about pediatric home ventilation decisions focus on families who opt for this intervention, leaving much unknown…

Background: The rising prevalence of life-limiting conditions in children and young people warrants an evaluation of paediatric palliative care, hospice services and delivered care. Aim: First, this study aimed to develop a deeper understanding of…

Context: Vaccine preventable diseases lead to distressful symptoms and complications among pediatric patients receiving specialized home palliative care. There was no data on the vaccination compliance.Objective: The objective was to determine the…

Against the background of a society that tends to underrate the grief experienced by parents whose infants have died prematurely, the model "SORROWFUL" is presented here with the intent to highlight the significance of the death of a newborn for the…

BACKGROUND AND AIM: End-of-Life (EOL) decision-making in paediatric critical care can be complex and heterogeneous, reflecting national culture and law as well as the relative resources provided for healthcare. This study aimed to identify…
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