Congenital disorders of glycosylation, formerly called carbohydrate-deficient glycoprotein syndrome, may present in infancy with slowly progressive neurologic deficits including cognitive impairment, ataxia, pigmentary retinal degeneration, and…
This study examines parental perceptions of the importance of grandparents as providers of routine care to children with disabilities and the impact of such assistance on parental well-being. Data are drawn from a survey and follow-up interactive…
The United States is becoming increasingly pluralistic. Pediatricians must become familiar with the factors that affect the emotional, physical, and spiritual health of their patients that are outside the kin of the traditionally dominant value…
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…
BACKGROUND: Children with complex chronic conditions (CCCs) might benefit from pediatric supportive care services, such as home nursing, palliative care, or hospice, especially those children whose conditions are severe enough to cause death. We do…
The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the…
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…
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…
BACKGROUND: Sleep-disordered breathing (SDB) and respiratory failure (RF) are complications of acid maltase deficiency (AMD), a rare hereditary myopathy. OBJECTIVE: To define the relationship between lung and respiratory muscle function, to establish…
In this preliminary study we examined both posttraumatic stress and general distress among parents of children diagnosed with a brain tumor. Participants included 28 parents of children diagnosed with a brain rumor who completed self-report measures…
A retrospective, qualitative, preliminary study examined if parental involvement in a life-support withdrawal (LSW) decision impacts the perceptions and adjustment of parents whose child died in a pediatric critical care unit. Participants were…
PURPOSE: To evaluate the clinical benefits of switching from morphine to oral methadone in patients who experience poor analgesia or adverse effects from morphine. PATIENTS AND METHODS: Fifty-two consecutive cancer patients receiving oral morphine…
BACKGROUND: There is a need for an instrument to record a life-course perspective of self-rated health. AIM: To test the "health-line", a simple, comprehensive method of collecting data on self-rated health over time. METHOD: In 1996, a questionnaire…
This article contextualizes an emerging issue in critical ethnography, specifically, the problem of establishing rapport and negotiating boundaries for a partial insider in a non-Western setting. A description of the author’s experiences while…
Telehealth is defined as the provision of health care via telecommunications wherever individuals are geographically separated. In this literature review, we explore the role of telehealth in family care. Telehealth has not been fully examined for…
CONTEXT: There are many patients with terminal illness for whom hospice care would be appropriate, but they either never enroll or enroll very late. In a pre-hospice program designed to help patients make the transition into hospice, we observed that…
Over 20 years ago, hospice in the United States evolved to provide end-of-life care for terminally ill patients. However, three major barriers exist, which limit access to hospice care. The first two, cultural and regulatory barriers, are not under…
The purpose of this family-focused, grounded-theory study was to develop a substantive theory that explains how individual family members heal in the aftermath of youth suicide. Individual healing following youth suicide is conceptualized as a…
OBJECTIVE: To study the usage, efficacy, and side effects patterns of atypical neuroleptics (atypicals) in adolescents and young adults with developmental disabilities (DDs) (mental retardation). METHOD: We undertook a chart review of adolescents and…
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.…
AIMS: To delineate common and variable features and outcome of children with congenital disorder of glycosylation type Ia (CDG-Ia) caused by the frequent R141H/F119L PMM2 genotype. METHODS: Clinical data on 25 patients (mean age 7.6 years, range…
AIMS: To determine the extent of futile care provided to critically ill children admitted to a paediatric intensive care setting. METHODS: Prospective evaluation of consecutive admissions to a 20 bedded multidisciplinary paediatric intensive care…
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…
The purpose of this study was to describe the factors that predict compliance among adolescents with a chronic illness. The data were collected by questionnaires from adolescents with asthma, epilepsy, juvenile rheumatoid arthritis (JRA) and…
BACKGROUND: The purpose of this study was to describe the variables influencing end-of-life care in children and adolescents dying of cancer. MATERIALS AND METHODS: Records of 146 children with cancer who died at Children's Hospital were reviewed for…
Peroxisomes are membrane-bound subcellular organelles that are involved in a variety of cellular functions. Disorders of peroxisomes, either in their assembly or single enzyme deficiencies, manifest themselves in the nervous system both in…
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…
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…
