Browse Items (57 total)

Using data from Americans' Changing Lives: Wave 1, 1986, this study examined the long-term effects on the personal functioning of older women and men following the death of an adult child or a spouse. Guided by Weiss's (1993) theoretical framework,…

We describe a male patient with late onset globoid cell leukodystrophy (GLD) (Krabbe's disease) still alive at 24 years of age, with a well preserved intellectual and communicative capacity, in contrast to visual failure and severe central pyramidal…

This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular…

We examined the strategies that people with osteoarthritis (OA) use to cope with illness-related problems in four areas: household activities, leisure activities, pain management, and social relationships. We also examined the relationship between…

Overnight polysomnography was performed in 10 subjects with tuberous sclerosis (TS) and partial epilepsy in order to investigate the relationships between sleep organization, sleep disorders and epilepsy. Sleep architecture abnormalities were…

Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…

Advances in the treatment of childhood diseases have created a population of technology-dependent and medically fragile children whose life expectancy is unknown and whose future quality of life is unpredictable. Seven commonly occurring events were…

This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…

We report the case of a 4-month-old infant with terminal malignancy who had systemic metastases and a localized metastasis to the dorsal midbrain periaqueductal gray (PAG). Extraordinary doses of opioids (dose equivalent of 2680 mg morphine…

OBJECTIVE: To identify the characteristics of the subset of children with malignancy in whom massive opioid infusions are needed during the terminal phase. DESIGN: Retrospective review of the records of the 199 patients who died of malignancy after…

Objectives.  —To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying.Design. —A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year…

Nursing theories which have evolved from mental health--psychiatric nursing have focused on the individual nurse-client relationship. Other nursing theories generally focus on the individual as client. Therefore, nurses working with families may have…

Shortness of breath and other respiratory symptoms frequently complicate the symptomatic management of terminally ill adults. The extent of the problem in children is not known, but anecdotal evidence from nurses and physicians experienced in…

Sleep disorders are common in NCL patients, The patients have problems such as frequent awakenings, difficulties with sleep onset, nightmares, and night terrors, The aim of the study was to examine whether the sleep disturbance in NCL can be…

Patients' informed acceptance of chronic medical therapy hinges on communicating the potential benefits of drugs in quantitative terms. In a hypothetical scenario of treatment initiation, the authors assessed how three different formats of the same…

This review considers some of the difficulties associated with quality assurance in the context of palliative care. In particular, it will focus on the key question of who should be responsible for assessing quality and the problems of over-reliance…

This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are…

Pain is difficult and sometimes frustrating to treat, even though new devices and new approaches have been developed in recent years. Pain varies tremendously from one patient to the next, and there are also some studies suggesting that the intensity…

Crisis theory, stress and coping theory, and research on parental stress and coping during pediatric critical care experiences are integrated into a conceptual framework for understanding, assessing, and ultimately intervening to reduce parental…

Although clinicians have described the value of support groups in assisting children mourn the death of someone close, little is known about helping children with bereavement. By understanding what helps children mourn, nurses can better facilitate a…

The article describes a study designed to explore the processes of sibling bereavement and to compare children's impressions with those of their parents. The Institute of Medicine model was used as a sensitizing framework for the study. Constant…

beta-Endorphin is an opioid peptide synthesized in the pituitary, hypothalamus, and immunocytes, known to affect immune responses both when added in vitro and when its synthesis is increased in vivo (e.g., during stress). We show here that, similar…

Abstract Specific grief behaviors observed in children ages 4-16 years in the 2 years after the death of a sibling are reported. Using the Child Behavior Checklist (CBCL), the parents of 90 boys and girls rated the occurrence of behavior problems in…

A child's pain is plastic and complex. In order to more effectively alleviate suffering, emphasis must shift from an exclusive focus on the source of tissue damage to a more comprehensive focus that includes factors that modulate pain. Evaluating a…

We report on clinical, electrophysiological, neuroradiological, and morphological data from 19 patients with different types (late infantile, juvenile, and adult) of neuronal ceroid-lipofuscinosis (NCL), observed in the last 10 years at the…

OBJECTIVES: To document the clinical and neurodevelopmental profiles of a cohort of patients with neonatal-onset propionic acidemia and to determine the efficacy of current therapy with respect to outcome. METHOD: The clinical, neurologic, and…

OBJECTIVE: The purpose of this paper is to present selected findings from child psychiatric epidemiology in areas of prevalence and correlates, and discuss issues in interpreting these data and their relevance. METHOD: Selected references were used.…

Pain in childhood has not always been managed as actively as that in adults because of the limited amount of research available to provide guidelines for the management of paediatric pain. However, for many years now the pharmacokinetics and…
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