Browse Items (52 total)

REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting…

Understanding parental experiences following infant death in the neonatal intensive care unit (NICU) is a high research priority and a necessary first step to improving health services. However, recruiting bereaved parents to discuss their…

INTRODUCTION: The possibility of sustaining life functions makes it difficult to distinguish between a dying patient and a patient with chances of survival, raising a dilemma for everyone around them. On the one side, continuing with life support…

Palliative care is delivered in almost all settings where healthcare is provided, including neonatal units, paediatric services, acute hospitals, general practices, community settings and aged care services. People who are dying have needs which…

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).…

Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children…

BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH…

Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is…

INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal…

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to…

Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on…

Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly…

AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous…

OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is,…

BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children.…

INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their…

BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and…

PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively.…

Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and…

There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and…

While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes…

Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle…

Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible,…

OBJECTIVES: Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents' initial mourning process. This study explores what interaction…
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