The early development of self-injurious behaviour in three young boys (aged 17, 25, and 30 months at start of study) with Lesch-Nyhan syndrome was examined by means of parental interviews and by direct observations completed at 3 to 4 monthly…
To examine the nature of sleep disturbance in patients with a variant form of late infantile neuronal ceroid lipofuscinosis (CLNS), we studied 12 patients (age range 7-32 years). We used a sleep questionnaire to assess sleep and its disturbances…
OBJECTIVE: To assess the rate and type of urinary incontinence in a large sample of children and adolescents with spinal muscular atrophy (SMA), a genetic disorder characterized by loss of motor function caused by anterior horn degeneration.…
To study the effect of dopaminergic drugs on the parkinsonism in juvenile neuronal ceroid lipofuscinosis, the authors conducted an open study of 21 patients. According to the motor Unified PD Rating Scale (UPDRS) score, treatment was initiated with…
OBJECTIVES: To assess adolescents' sources of health care information, explore beliefs about topics which health care providers should address and about those which have been addressed, and identify topics that are embarrassing for adolescents to…
This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents…
Acetaminophen is widely used in children, because its safety and efficacy are well established. Although the risk of developing toxic reactions to acetaminophen appears to be lower in children than in adults, such reactions occur in pediatric…
PURPOSE: To explore fathers' experiences of pregnancy after a prior perinatal loss. STUDY DESIGN AND METHODS: This phenomenological study used unstructured, in-depth interviews with four men whose wives were currently pregnant subsequent to previous…
Patients with juvenile neuronal ceroid lipofuscinosis (JNCL) often have severe psychiatric symptoms. These are common in their mid-teens and include such symptoms as anxiety and affective and psychotic disorders. The older antidepressants and…
BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone…
This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were…
Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the…
OBJECTIVE: To examine whether typical pain behavior, as reported by caregivers, could be used prospectively to predict future pain behavior and to derive a subset of core items from the Non-Communicating Children's Pain Checklist. STUDY DESIGN:…
This article will be concerned with the phenomenon of vitality, which emerged as one of the main findings in a larger grounded theory study about life and death decisions in hospitals' neonatal units. Definite signs showing the new-born infant's…
OBJECTIVE: To determine the attitudes and practices of pediatric critical care attending physicians and pediatric critical care nurses on end-of-life care. DESIGN: Cross-sectional survey. SETTING: A random sample of clinicians at 31 pediatric…
It is becoming increasingly evident that nutrition is not only an important component of health but also that levels of specific nutrients can affect disease expression. This is particularly apparent in the realm of HIV disease. Despite this…
We have previously shown that beta-endorphin (END) is contained and released from memory-type T-cells within inflamed tissue and that it is capable to control pain (J Clin Invest 100(1) (1997) 142). Methionine-enkephalin (MET) and Dynorphin-A (DYN)…
Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…
There is an urgent need for robust empirical data to guide the assessment and treatment of patients near the end of life. Because they are important providers of end-of-life care in this country, hospices have an important role to play in…
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients &…
PURPOSE: To determine hormone concentrations (ACTH, cortisol, beta-endorphin) in children before and after surgery, to assess the correlation between any hormonal changes and to study the influence exercised on them by the severity of surgical stress…
The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence, called narrative medicine, is…
BACKGROUND: The management of pain in children has advanced enormously in recent years. Pharmacological treatment of pain is complicated however, by the widespread use of unlicensed and off label medicines in the paediatric population, leading to…
Recognizing that little is known about use of quality improvement (QI) processes to enhance care of the dying, 11 large hospices exchanged information about their QI programs. These hospices reported monitoring from 3 to 50 outcomes measured by…
Practice and empirical data indicate concerns regarding the delivery of primary palliative care, particularly the provision of a multidisciplinary approach. A collaborative study was undertaken between an academic unit and primary care practice to…
The death of an adolescent is a particularly complex issue. The process of grieving and coping can be complicated by the tension that may have existed in the parent/child relationship because of the conflict in terms of personal ideology at this…
People who have lost a travel one often try to make some meaning of their loss. The authors explore the ways people try to make meaning of loss, the factors that predict difficulty in making meaning, and the emotional outcomes of finding meaning.…
