The aim of this study was to investigate how parents cope with and care for a child with Dravet syndrome, a severe myoclonic epilepsy with three distinct stages. Twenty-four parents of children with Dravet syndrome participated in a semi-structured…
This paper reports the development and validation of a disease-specific measure of health status and well-being of children with severe cerebral palsy (CP). The Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) was…
The authors conducted a meta-analysis to examine the relations of benefit finding to psychological and physical health as well as to a specific set of demographic, stressor, personality, and coping correlates. Results from 87 cross-sectional studies…
Using a collective case study ethnographic approach, nine individuals comprising three Mexican American families were interviewed about their family bereavement experiences after the death of a child. All families were Catholic, had surviving…
Telomeres have emerged as crucial cellular elements in aging and various diseases including cancer. To measure the average length of telomere repeats in cells, we describe our protocols that use fluorescent in situ hybridization (FISH) with labeled…
AIMS: The mucopolysaccharidoses (MPS) are a heterogeneous group of rare disorders characterised by accumulation of glycosaminoglycans within multiple organ systems. This study aimed to determine the prevalence and severity of ocular complications in…
The focus of neurogastroenterology in Rome II was the enteric nervous system (ENS). To avoid duplication with Rome II, only advances in ENS neurobiology after Rome II are reviewed together with stronger emphasis on interactions of the brain, spinal…
The purpose of this article is to describe the role of spirituality as a coping mechanism in the lives of parents of children with cancer. This exploratory study was conducted using a dominant-less dominant research design with phenomenology as the…
The objectives of the study were to evaluate the psychometric properties and appropriateness of instruments for the study of resilience in adolescents. A search was completed using the terms resilience and instruments or scales using the EBSCO…
We surveyed cognitively normal teens with and without chronic illness regarding the perceived physical and social impact of various chronic diseases including asthma. The overall physical impact of asthma was perceived equivalently to diabetes and…
Childhood grief and mourning of family and friends may have immediate and long-lasting consequences including depression, anxiety, social withdrawal, behavioral disturbances, and school underachievement. Childhood pet bereavement is no less…
The study explores development of the concept of death among 204 Chinese children and adolescents and analyzes the relationships between death concept development and background variables. A coding manual for content analysis of death constructs…
The purpose of this study was to determine the correlation of perceived stress with selected physiological and psychological factors in an HIV-infected, predominantly African American population and to assess the multivariable effects on perceived…
BACKGROUND: Assessment of everyday functioning in children may depend to a considerable extent on the framework used to conceptualise functioning and disability. The Pediatric Evaluation of Disability Inventory (PEDI) has incorporated the mediating…
PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the…
BACKGROUND: The use of psychotropic medications-in particular, mood stabilizers--in youths with psychiatric illness has grown. There are trends toward polypharmacy and the increased use of newer mood stabilizers in youths with psychiatric illness…
Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and diversity. This article offers…
Objective: To clarify the relationship between symptoms, clinical signs and physiological abnormalities that were motivating the initiation of home mechanical ventilation in patients suffering from neuromuscular diseases.Methods: From The Swedish…
OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff)…
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…
BACKGROUND: Although in-depth interviewing is well suited to studying the sensitive topic of end-of-life decision making, no reports have been published assessing the effects on parents of participating in interviews regarding end-of-life decision…
OBJECTIVE: To investigate clinical and demographic factors affecting the nature of end-of-life decisions and pediatric palliative care. DESIGN: Charts of 236 expired children were retrospectively reviewed for presence of endof- life care (EOLC)…
PURPOSE: This paper presents the components of a pediatric palliative care demonstration program implemented in Seattle during the period 1999-2001. It reports findings from the evaluation of quality of life and family satisfaction among enrolled…
OBJECTIVE: To implement and evaluate a quality improvement program of interdisciplinary palliative care education and support intended to increase the competence, confidence and ability to manage personal grief of health care professionals caring for…
Metabolic storage disorders are caused by mutations in genes that result in insufficient activity of enzymes required for the catabolism of substances that arise from the turnover of senescent cells in the body. Among the most prevalent of these…
BACKGROUND: Inflammatory bowel disease (IBD) is an ideal disease for investigating adolescent adjustment to chronic illness, given its embarrassing, socially limiting, appearance-changing symptoms and adolescent onset. OBJECTIVE: To compare…
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…
OBJECTIVE: To examine symptom levels of posttraumatic stress (PTS) in children with cancer and their parents as a function of patient and parent adaptive style. METHOD: Participants included 162 pediatric cancer patients and their parents. Patients…
Objective To review empirical studies of the efficacy of psychological interventions as adjuvanttherapies for children with pediatric diabetes, cancer, cystic fibrosis, and sickle celldisease. Methods A search was conducted for qualifying studies…
Adolescents and young adults (AYAs [15 to 29 years of age]) with cancer have a distinct cancer epidemiology, evolving hormonal milieu, maturing development, transitions in autonomy, increasing demands in education, entry into the workplace and family…
Home healthcare work, involving physical labor, nursing care, medical monitoring, administrative, planning and accounting, advocacy and emotion work, is unpaid and largely invisible. This article, based on focus group interviews with mothers whose…
Neonates in the neonatal intensive care unit experience painful procedures. Over the last 10 years, investigators have examined several pharmacologic and nonpharmacolgic treatment strategies to decrease or eliminate the pain associated with…
Many infants die immediately prior to birth or in the neonatal period; thus, it is imperative that we begin to recognize the importance of integrating palliative care into pregnancy and the immediate newborn period. While advances in perinatal care…
PURPOSE OF REVIEW: This review focuses on the prognostic implications and therapeutic approaches in cardiac cachexia - a syndrome that has been recognized for a long time, although it has only received increased attention lately. RECENT FINDINGS:…
PURPOSE: The purpose of this study was to assess the effect on intraocular pressure (IOP) and the safety and tolerability of oromucosal administration of a low dose of delta-9-tetrahydrocannabinol (Delta-9-THC) and cannabidiol (CBD). PATIENTS AND…
The cyclical nature of chronic illness requires that children with inflammatory bowel disease be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues to…
