Browse Items (86 total)

The belief that loss can result in growth has been hypothesized for centuries.Yet, traditional grief theories have viewed grief work as a process of resolving grief and returning to normal. Formal conceptualizations of grief to growth models have…

Niemann-Pick disease type C (NPC) is an autosomal recessive, neurovisceral lipid storage disorder. Mutations in two genes (NPC1 and NPC2) produce indistinguishable clinical phenotypes by biochemical mechanisms that have not yet been entirely…

PURPOSE OF REVIEW: Sleep-wake problems such as night wakings, excessive crying, or difficulties in falling asleep are frequent behavioral issues during childhood. Maturational changes in sleep and circadian regulation likely contribute to the…

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…

With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate…

The development of transitional care is one of the major challenges for the twenty-first century as the survival rates and medical outcomes for child and adolescent recipients of transplants continue to improve. Such developments must include both…

We are presenting an integrative paradigm of care. We will review the basis for its evolution from prior series and parallel models. In this paradigm, healing and palliation (when indicated) are introduced in parallel with curative measures as soon…

The theory of uncertainty in illness has its strongest support among subjects who are experiencing the acute phase of illness or are in a downward illness trajectory (mishel, 1988a). The theory has not addressed the experience of living with…

In the past decade there have been significant advances in our understanding of the molecular genetic basis of the neuronal ceroid lipofuscinoses, a clinically and genetically heterogeneous group of childhood neurodegenerative storage disorders.…

OBJECTIVE: To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. DATA SOURCES: We searched the MEDLINE database from inception to April 2010 for all English language articles…

This paper reviews some of the recent empirical studies validating the Circumplex Model and describes the newly developed self-report measure, FACES III. Studies testing hypotheses derived from the Circumplex Model regarding the three dimensions of…

This article describes the framework and clinical pathway for ON TRAC (Taking Responsibility for Adolescent/Adult Care), a model of transition care for adolescents with chronic health conditions, as applied to pediatric transplant transition. This…

Considerable research has focused on hospitalizations for ambulatory care–sensitive conditions (ACSHs), but little of that research has focused on the role played by chronic disease in ACSHs involving children or youth (C/Y). This research…

In recent years, the observation that the response of patients to opioid drugs may be influenced by properties inherent in the pain or pain syndrome, such as its pathophysiology, has evolved into the belief that certain types of pain, e.g.,…

BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some…

Investigators of sibling bereavement contend that the death of a sibling represents a unique and intense loss experience. The empirical literature, however, lacks conceptual clarity about the characteristics of sibling bereavement. Metaphors of…

Mucopolysaccharidosis IIIC (MPS IIIC, Sanfilippo C syndrome) is a lysosomal storage disorder caused by deficiency of the lysosomal enzyme acetyl-CoA:alpha-glucosaminide N-acetyltransferase (HGSNAT). We performed a clinical study on 29 Dutch MPS IIIC…

Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…

OBJECTIVE: To develop and validate a mortality risk predictor based on physiologic data that estimates daily the probability of a patient dying within the next 24 hrs as that probability changes with disease and recovery. SETTING: Nine pediatric ICUs…

PURPOSE: Social network analysis (SNA) provides a way of quantitatively analyzing relationships among people or other information-processing agents. Using 2 practices as illustrations, we describe how SNA can be used to characterize and compare…

Adams et al. (1992) presented the results of 2 studies designed to replicate previous work by Davis (1989) regarding perceived usefulness, ease of use, and their influence on the usage of information technology. To measure the influence of usefulness…

This article offers an integrative, interdisciplinary model of bereavement as a family developmental process that unfolds in cultural context. A critique of cultural assumptions highlights the culture-bound nature of prevailing North American…

While chronic illness has a profound impact upon the individual, an immense burden is imposed upon the family. When the competing demands of an illness and the family escalate exponentially, there may be a crisis. Traditionally, crisis theory has…

Passive or emotion-focused coping strategies are typically related to worse pain and adjustment among chronic pain patients. Emotional approach coping (EAC), however, is a type of emotion-focused coping that appears to be adaptive in some nonpain…

OBJECTIVE: To determine the impact of an innovative professional educational approach on clinicians' confidence and ability to make institutional improvements in pediatric palliative care. DESIGN: Evaluation to assess impact of educational…

Pain is a complex construct that contributes to profound physical and psychological dysfunction, particularly in individuals coping with chronic pain. The current paper builds upon previous research, describes a balanced conceptual model that…

The multidisciplinary field of stress and stress-related health outcomes has generated theoretical and practical knowledge which is of interest to nurses. Theoretical developments which have assumed a prominent role in the study of stress, health and…

BACKGROUND: Birth defects impose substantial costs on both families and society because of medical, developmental, and special education needs. Caring for children with birth defects also may influence caregiver time and impact the family. However,…

Randomised controlled trials (RCTs) alone are unlikely to provide reliable estimates of the incidence of rare events because of their limited size. Cohort, case control, and other observational studies have large numbers but are vulnerable to various…

Although clinicians may value respecting a patient's or surrogate's autonomy in decision-making, it is not always clear how to proceed in clinical practice. The confusion results, in part, from which conception of autonomy is used to guide ethical…

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