Browse Items (101 total)

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…

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…

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…

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.…

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…

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…

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…

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…

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: 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…

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…

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…

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.…

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…

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: Trisomy 13 and trisomy 18 are common life-limiting conditions associated with major disabilities. Many parents have described conflictual relationships with clinicians, but positive and adverse experiences of families with healthcare…

Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning…

Education is integral to the development of children's palliative care (CPC) globally; thus, the International Children's Palliative Care Network (ICPCN) developed a training programme including face-to-face and e-learning programmes to increase…

Study objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the…

This study explored parents' experiences of services for children with life-limiting neurodevelopmental disabilities (LLNDD) using mixed methods. The study included a quantitative survey (n = 63) and qualitative interviews (n = 12), with a focus on…

BACKGROUND: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation…

Background: Best practice, palliative and end-of-life care (EOLC) enhances symptom management and quality-of-life for individuals who are palliative and dying, and their families. Although Gold Coast Health (GCH) has a dedicated, interdisciplinary…

Introduction: The Children's Hospital of Eastern Switzerland (OKS) is a hospital with 76 beds. A multiprofessional PPC and ethic team was established in 2007. After nine years of intensive development our PPC program reached full size (notification…

Objective: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years. Study design: Internet-based survey (2016) involving 170 tertiary neonatal intensive care…

Introduction: Patients may be admitted to hospital by paediatric palliative care units (PPCU) for different reasons, due to their different needs and clinical problems. The objective of this study is to present the data of patients admitted to the…

Background Government policy identifies home as the preferred place of death (PPOD) for children and young people (CYP) and suggests a home death as an indicator of the quality of care. A recent systematic review found a lack of compelling evidence…

Objectives: *Establish the need for a family caregiver intervention for parents of children with rare diseases.*Introduce the intervention and its components.*Disseminate findings from the piloting of this intervention. In the U.S. a rare disease is…

Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for…

Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively…

Introduction About 4% of all cancers occur in adolescent and young adults (AYA) population in Japan. Quality and intensity of end-of-life (EOL) care in this population vary among different nationalities or cultures. Objectives We aimed to evaluate…

Background/Objectives: Although Pediatric palliative care (PPC) has developed worldwide with the increasing number of children with serious illness, the concept of Pediatric palliative care is still unfamiliar in Asia. We report on Pediatric cancer…

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