OBJECTIVE AND IMPORTANCE: The "tight-fit" hypothesis and subsequent current understanding of acute mountain sickness (AMS) is that individuals with less compliant cerebrospinal fluid systems (smaller ventricles and cerebrospinal fluid spaces) have a…
BACKGROUND: Cancer in a child is associated with a significant impact on parental employment. We assessed the proportions of parents of survivors and bereaved parents working and reporting sick leave five years after end of successful treatment…
This longitudinal study examined the relative impact of major variables for predicting adjustment (in terms of both grief and depression) among bereaved parents following the death of their child. Couples (N = 219) participated 6, 13, and 20 months…
Background/Objectives: Discussing end-of-life (EoL) care is very challenging for adolescents and young adults (AYA) living with cancer. While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid AYA in…
BACKGROUND: A growing body of research indicates that physicians suffer high levels of stress, depression and burnout. Related literature has found that physician stress can negatively impact patient care. This study builds upon previous research…
BACKGROUND: Effective transition to adult services is required by an increasing number of children with ongoing needs. AIM: To identify practices that promote continuity at transition between child and adult services. METHODS: Systematic examination…
OBJECTIVES: To gauge the perspectives of adolescents and adults with cystic fibrosis (CF) and their parents regarding the transition from paediatric to adult-oriented health care. METHODS: Cross-sectional survey using an anonymous, semi-structured…
OBJECTIVE: Review and analyze the evidence base comprising methadone conversion methods and associated dosing ratios for the treatment of pain. DESIGN: Systematic review. METHODS: Clinical trials and retrospective analyses, case series, and case…
In this study, we explore issues of self and shame in illness accounts from women with chronic pain. We focused on how these issues within their stories were shaped according to cultural discourses of gender and disease. A qualitative study was…
In high-mortality contexts, research examining the effects of child mortality has focused almost exclusively on couples' fertility responses while overlooking other potential family consequences. Using nationally representative survey data from 13…
Hypotheses generated by the precaution adoption process model, a stage model of health behavior, were tested in the context of home radon testing. The specific idea tested was that the barriers impeding progress toward protective action change from…
Ongoing interest in the improvement of pain management with opioid analgesics had led to the investigation of sublingual opioid absorption. The present report determined the percent absorption of selected opioid analgesics from the oral cavity of…
The body composition of 23 patients with cachexia resulting from malignant or benign inflammatory disease was studied. Skinfold thickness and radioisotope tracer measurements enabled us to estimate total body fat, lean body mass, the ratio of fat…
Transition is a generic issue for subspecialties dealing with chronic illness and has received little attention to date. Transfer to adult care occurs at the end of a transition process that must be individualised for each patient and takes into…
Introduction: The World Health Organisation defines paediatric palliative care (PPC) as caring for the child's body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be…
OBJECTIVES: Type B Niemann-Pick disease (NPD-B) caused by acid sphingomyelinase deficiency is a rare, autosomal recessive, lysosomal storage disorder with a broad range of disease severity. The objectives of this study were to document the natural…
BACKGROUND: Chronic neuropathic pain affects 1%-2% of the adult population and is often refractory to standard pharmacologic treatment. Patients with chronic pain have reported using smoked cannabis to relieve pain, improve sleep and improve mood.…
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused…
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick…
OBJECTIVE: (1) To introduce photovoice, a participatory action research methodology, for use by MCH program managers to enhance community health assessments and program planning efforts, (2) to enable community people to use the photovoice…
Photo novella does not entrust cameras to health specialists, policymakers, or professional photographers, but puts them in the hands of children, rural women, grassroots workers, and other constituents with little access to those who make decisions…
OBJECTIVES: We compared end-of-life care for patients with and without orders for "comfort measures only" (CMO) and evaluated whether standards for palliative medicine were met., DESIGN: We retrospectively reviewed the charts of 40 patients, 20 with…
OBJECTIVES: The aim of this research was to validate global and behavioral observation methods for measuring pain in children with cerebral palsy (CP)., MATERIALS AND METHODS: Nineteen children diagnosed with CP (2-21 years of age) and their primary…
To obtain parents' identification and description of the behaviors, health care procedures and daily living situations associated with pain in children with cerebral palsy (CP), surveys were sent to parents of children with CP recruited via a clinic…
RESULTS: Thirty-eight parent dyads participated (return rate 84%; 35% oncological disorders). According to parental report, dyspnea (61%) and pain (58%) were the dominant symptoms with an overall high symptom load (83%). Pain, agitation, and seizures…
OBJECTIVE:
This study analyzes symptom perception by parents and healthcare professionals and the quality of symptom management in a pediatric palliative home care setting and identifies which factors contribute to a high quality of palliative and…
PURPOSE: The purpose of this study was to describe and show effectiveness of the outreach team model of palliative care (PC) in allowing home death for children with incurable cancer. PATIENTS AND METHODS: Over 7 months, 185 children from 22 United…
This report describes 7 patients, aged 30 to 43 years, suffering from a mild variant of Sanfilippo B-disease. Somatic findings in these patients are unremarkable. Dementia and behavioral disturbances occurred late in the course of the disease. All 7…
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…
CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…
BACKGROUND: Population-based studies monitoring end-of-life care are lacking. This study describes involvement of caregivers, access to specialist palliative care, treatment goals (cure, life-prolonging, or palliation), and content of end-of-life…
The characteristic clinical presentation, especially the appearance of muscle symptoms, is quite unique in children carrying the mtA8344G mutation. The diagnosis of MERRF syndrome is seldom made in the pediatric age. Fatigue is a common finding in…
Records on recovery after cholecystectomy of patients in a suburban Pennsylvania hospital between 1972 and 1981 were examined to determine whether assignment to a room with a window view of a natural setting might have restorative influences.…
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the…
