Browse Items (86 total)

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…

The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care…

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…

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…

BACKGROUND: Previous research has found that acceptance of pain is more successful than coping variables in predicting adjustment to pain. PURPOSE: To compare the influence of acceptance, pain-related cognitions and coping in adjustment to chronic…

While our understanding of adolescent bereavement has greatly expanded in recent years, one area yet to be clarified is the relationship between grief following a significant loss and spirituality. This article strengthens our understanding of this…

OBJECTIVES: Develop a prediction model to identify persons who have an increased risk of dying within the next 36 months, in order to focus additional resources and assessment in areas related to advanced care planning. DESIGN: Retrospective study…

Objectives: The loss of a child is a traumatic life event. While bereavement research has examined the roles of both interpersonal attachment and religiosity in coping with loss, only a handful of studies have addressed the concept of attachment to…

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…

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…

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…

When treating individual patients, physicians may face difficulties using the evidence from center-based randomized control trials (RCTs) due to limitations in these studies generalizability. Therefore, they often perform their own "informal" tests…

OBJECTIVE: To examine how individual- and family-level predictors in late childhood and preadolescence relate to psychosocial adaptation (i.e., scholastic success, social acceptance, and positive self-worth) in early adolescence. METHOD: This…

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…

Many models of pain give coping an important role in understanding adaptation to chronic pain. Among these, Lazarus and Folkman's cognitive-phenomenological model of stress and coping provides a theoretical framework to conceptualise stress phenomena…

BACKGROUND: Mixed methods or multimethod research holds potential for rigorous, methodologically sound investigations in primary care. The objective of this study was to use criteria from the literature to evaluate 5 mixed methods studies in primary…

The work of perinatal nurses sometimes includes emergencies involving death, or near death, which can leave health care providers with feelings of stress and grief. After experiencing a particularly stressful period, nurses at our organization…

BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for…

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…

This study of 124 parents of children diagnosed with cancer investigates parents' perceptions of their role in the illness situation. The study found that mothers and fathers differ in their experience of and response to parenting a child with…

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

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…

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,…

AIM: This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services., BACKGROUND: An effective advance care planning programme involves an organizational wide…

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…

Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately,…

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…

Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven…

PURPOSE: Although the bulk of current pediatric palliative care (PPC) services are concentrated in inpatient settings, the vast majority of clinical care, symptom assessment and management, decision-making, and advance care planning occurs in the…

Juvenile hyaline fibromatosis (JHF) and infantile systemic hyalinosis (ISH) are autosomal recessive syndromes of unknown etiology characterized by multiple, recurring subcutaneous tumors, gingival hypertrophy, joint contractures, osteolysis, and…
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