Browse Items (380 total)

Emeritus Professor Edward Alan Glasper from the University of Southampton discusses the complexities of care delivery to children in hospital who have life limiting medical conditions.

Today more and more children are living with complex health care needs, many of these children are living with life limiting and/or threatening conditions, some are medically fragile. To live a childhood these children must live in communities and…

Introduction: Despite significant advances in disease treatment, resources for the pediatric palliative care (PPC) for children with serious illnesses are limited in South Korea. The obstacles to provide optimal PPC include inadequate funding,…

Introduction. Parents of a child diagnosed with a life-threatening illness often experience the state of cognitive and emotional disorganization. The key factor determining parents-physicians cooperation is the quality of their relations. That is why…

Background: Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care,…

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Context: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life…

Nurses and healthcare professionals may have difficulty adjusting to and comprehending their experiences when a patient's life ends. This has the potential to interfere with patient care. Reflection on past events and actions enables critical…

End of life care policy in the UK advocates open discussions between health professionals and patients as the end of life approaches. Despite well documented understanding of the progression of life-limiting neuromuscular diseases, the majority of…

Background: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. Aim: To compare language used by PC team and ICU…

BACKGROUND: Perinatal death is one of the most difficult bereavements due to the shock and profound grief experienced by parents. It has been established that such bereavement has a life-lasting impact. Twin pregnancy is associated with increased…

Background. - Though ethical dilemma is common in neonatal practice, it is only recently subject to scientific research. Objectives. - We aimed to describe neonatologists' practices in end of life decision-making processes and in palliative care, and…

Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed…

Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into…

Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness,…

Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth…

Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty…

Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of…

Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT).…

2017

BACKGROUND: End-of-life decisions (EoLDs) are very difficult to make. How parents and physicians incorporate quality of life (QoL) considerations into their end-of-life decision making (EoLDM) for children with profound intellectual and multiple…

Importance: The death of a close relative is associated with an increased mortality risk among the bereaved, but much less is known about the potential association of the death of a sibling in childhood with mortality in this population. Objective:…

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: Globally, perinatal death is on a decline. However, its impact on the healthcare profession is huge. The existing literature focuses on examining perinatal death from parents' perspectives and patient death from the perspectives of nurses…

The death of a child can be seen as one of the most devastating experiences for parents which can result in a unique and enduring grief. Parents with surviving children face the task of navigating their own grief while continuing to parent. This…

Conceptual confusion is a primary barrier to providing quality palliative care. This study aimed to analyze pediatric palliative care (PPC) guidelines from a conceptual perspective to facilitate a shared understanding of palliative care in…

Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an…

In Sweden, around 450 babies are stillborn every year. Usually, the parents stay at the hospital a couple of days after the birth and they can have the baby in their room. Due to the importance to keep a dead body cold it has, until recently, been a…

Healthcare providers influence the experiences of families during end of life care and death of a child*. Nurses are best placed to provide bereavement support as they have opportunities to build therapeutic relationships through closely and…

As the demand for pediatric palliative care (PC) increases, data suggest that Latino children are less likely to receive services than non-Latino children. Evidence on how to best provide PC to Latino children is sparse. We conducted a narrative…

The present study investigated the presence and possible predictors of complicated grief symptoms in perinatally bereaved mothers (N = 121) up to 5 years postbereavement. The presence of complicated grief scores in the clinical range was 12.4%, which…

Children with severe impairment of the central nervous system (CNS) experience gastrointestinal (GI) symptoms at a high rate and severity, including retching, vomiting, GI tract pain, and feeding intolerance. Commonly recognized sources of symptoms…
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