Browse Items (179 total)

CONTEXT: Losing a child is the most burdensome event parents can experience involving risks of developing anxiety and depression. OBJECTIVES: To investigate anxiety and depression in bereaved parents during their child's life-limiting illness and…

Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear. Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course…

Aims There is a statutory requirement to review all child deaths in England. The aim of this study is to collate and evaluate child death data from all Child Death Overview Panels (CDOPs) within a single UK region to inform strategic planning.…

Introduction: This National Hospital Clinical Research Program (PHRC) was conducted in France between 2012 and 2016 to depict palliative practices in spinal muscular atrophy type 1 (SMA-1). New drugs (Nusinersen) have been developed and may modify…

Background: and aim Palliative Care for Children is defined as 'an active and total approach to care, from the point of diagnosis or recognition throughout the child's life, death and beyond'. It is recognised that the prevalence of children with…

BACKGROUND: Medical Assistance in Dying (MAID) has been a heavily debated topic in Canada over the last decade. Since the royal assent of Bill C-14 in 2016, MAID has been available to Canadians 18 years of age or older meeting specific eligibility…

Introduction: Many paediatric hospitals are treating increasing numbers of children with medical complexity (CMC), diagnosed with chronic life-limiting illnesses and requiring life-sustaining home medical technology. These medically fragile children…

BACKGROUND: Discomfort exists discussing goals of care (GOC) with families of children with advanced life-threatening illnesses. There also exists important variability in the management of these patients. OBJECTIVE(S): This study seeks to explore…

OBJECTIVES: Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHOD(S): Retrospective chart review of all deceased…

The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by…

Learning Objectives: Palliative Care (PC) is a scarce resource. Little is known about its allocation among critically ill children. Previously proposed criteria may help identify children who may benefit from PC. Method(s): This is a retrospective…

Four patients with Lesch Nyhan disease were treated with L 5 hydroxytryptophan, alone, or in combination with carbidopa, and their effect on self mutilatory behavior was compared to that observed during periods in which placebo was administered.…

Aim: To quantify, in individuals with Rett syndrome with the capacity to walk, walking-based activity and sedentary time, and to analyse the influences of age, walking ability, scoliosis, and the severity of epilepsy. Method: Sixty-four participants…

Rett's syndrome is a progressive disorder that occurs in females and is characterized by autistic behavior, dementia, ataxia, loss of purposeful use of the hands, and seizures. Patients with Rett's syndrome have been observed to have stereotyped hand…

Objectives: Rett syndrome (RS) is a neurodevelopmental disorder and the second major cause of mental retardation in females. The aim of this study was to evaluate swallowing problems of RS patients by endoscopic assessment and compile a list of…

PURPOSE: This study is aimed to investigate the effect of web-based pediatric palliative care education on nursing students' knowledge level and practices related to palliative care.

Background and context: In DR Congo, many cancer patients in the terminal phase of their condition have minimal access to palliative care. There is a combined effect of poverty, the deteriorationofthe health system and the absenceof a well-defined…

Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its…

Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how…

Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief…

Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April…

Purpose: This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were…

Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in…

Background: Approximately 500,000 children in the United States suffer from serious illnesses each year and 50,000 die annually. Hospice and palliative care services are known to be beneficial for many children with serious illnesses and their…

Objectives: * List the types of community-based hospice and palliative care programs for children and describe barriers and facilitators to the use of these programs. * Describe the rates of referral and enrollment to community-based programs,…

Objectives: * Identify parent perceptions of suffering at end of life in children with life-threatening complex chronic conditions. * Describe factors associated with child suffering at end of life. Original Research Background: Research in children…
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