OBJECTIVES: To examine withdrawal and limitation of life-sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. DESIGN: Retrospective chart review…
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and…
OBJECTIVE: The goal was to clarify potential mechanisms underlying differences/disparities in pediatric palliative and end-of-life care. METHODS: We systematically searched online databases to identify articles relating to differences/disparities in…
In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.
BACKGROUND: In the last week of life, the daily opioid dose in children is highly variable, making the use of patient-controlled analgesia (PCA) a useful therapy option. Scientific data on the use of PCA in paediatric palliative care are rare.…
PURPOSE: To assess the use of complementary and alternative medicine in hospice care in the state of Washington. METHODS: Hospices offering inpatient and outpatient care in Washington State were surveyed by phone interview. RESULTS: Response rate was…
Duchenne muscular dystrophy (DMD) is familiar to paediatricians as the most common childhood muscular dystrophy and leads to severe disability and early death in the late teenage years if untreated. Improvements in general care, glucocorticoid…
PURPOSE: To assess unresolved parental grief, the associated long-term impact on mental and physical health, and health service use. PATIENTS AND METHODS: This anonymous, mail-in questionnaire study was performed as a population-based investigation…
PURPOSE: Little is known about how couples care for the terminally ill child with cancer. We assessed both parents' understanding of prognosis and treatment goals for children with cancer and explored whether sex mediates these views. We also…
Ensuring a safe and effective transition of young people with chronic illness and disability from paediatric care to adult health services is a key quality issue for the NHS. To achieve this, three elements must be pursued with vigour. Firstly, a…
AIM: With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for…
PURPOSE OF REVIEW: The transition of healthcare from pediatric to adult settings has become more significant over the past 20 years as the survival of young people with chronic illness and disability has increased and healthcare delivery has become…
BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of…
Purpose: Early screening and intervention for dysphagia is crucial to offset potential outcomes such as compromised nutrition or reduced respiratory function. Current paediatric dysphagia screening tests are subjective with poor sensitivity and…
Although laws such as the Patient Self-Determination Act encourage individuals to address their end-of-life treatment preferences using advance directives, the wishes of children have traditionally been ignored or, perhaps even worse, overruled.…
PURPOSE: The aim of this article was to determine reliability of the Test of Infant Motor Performance (TIMP) in infants with spinal muscular atrophy, type I (SMA-I). METHODS: Interrater reliability training was undertaken by 17 physical therapist…
Objective: The study examined 1) whether the benefits of mothers' and fathers' accepting relationships with their adolescents on diabetic control were due to parental monitoring and 2) how parents together may provide sufficient acceptance and…
BACKGROUND: Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disease subdivided into three phenotypes of increasing severity: Scheie, Hurler-Scheie and Hurler. To gauge the effectiveness of treatments and to determine the load likely…
The enteric nervous system is an integrative brain with collection of neurons in the gastrointestinal tract which is capable of functioning independently of the central nervous system (CNS). The enteric nervous system modulates motility, secretions,…
We report eight cases of genetically proven ULD, with the aim of reassessing the clinical characteristics and natural history of ULD in genetically characterized patients. The eight patients had their first symptoms at mean age of 10.6 years (range:…
BACKGROUND: Public health benefits from research often rely on the use of data from personal medical records. When neither patient consent nor anonymisation is possible, the case for accessing such records for research purposes depends on an…
Psychosocial development in children with chronic disease is a key issue in paediatrics. This study investigated whether psychosocial adjustment could be reliably assessed with the 42-item Adolescent Adjustment Profile (AAP) instrument. The study…
BACKGROUND: Signs and symptoms of a common cold reported in young children are those perceived by caretakers. Objective signs include cough, fever, and sneezing. Subjective symptoms include nasal congestion, feverishness, headache, and sore throat.…
This article reports on the first stage of a process to develop a clinical performance indicator for a community-based palliative care service that may inform the development of an agreed set of indicators for the whole sector. The study explores…
