Electronic neuromodulation can be a safe and effective treatment for intractable pain. Unfortunately, many physicians and other healthcare providers know nothing of neuromodulatory techniques. There is little opportunity to learn about them in…
Pyruvate dehydrogenase (PDH) deficiency is a major cause of neurological dysfunction and lactic acidosis in infancy and early childhood. The great majority of cases (>80%) result from mutations in the X-linked gene for the E1alpha subunit of the…
We report a male patient with a history of recurrent idiopathic vomiting, normal plasma ammonia and glutamine concentrations in acute phase, who died at 3 years of age. Ornithine transcarbamylase deficiency was diagnosed after detecting elevated…
This paper uses panel data from the Statistics Canada National Longitudinal Survey of Children and Youth (1994 through 2000) to study the implications of parenting a child with a disability or chronic condition for subjective assessments of parental…
There is growing interest in researching posttraumatic growth and understanding how to enhance positive outcomes in trauma survivors. This study undertook a systematic exploration of the posttraumatic growth in bereaved caregivers of people with…
This article, which is partly biographical and partly scientific, summarizes a life in academic medicine. It relates my progress from benchside to bedside and then to academic and research administration, and concludes with the teaching of human…
Pain is one of the most feared problems for adolescents with cancer. Pain produces stress with negative physiological and psychological effects. Therefore, effective pain management during cancer treatment may influence the outcome. This study…
OBJECTIVE: To assess health insurance status and health care access of young adults with disabilities attributable to a chronic condition. DESIGN AND SETTING: We analyzed data from the National Health Interview Survey from 1999 to 2002. We present…
BACKGROUND: This study is a pilot experience aiming to investigate the compliance of an institutional cohort of Italian children treated for a malignant disease and their families in completing the health utilities index2, (HUI2) and the…
OBJECTIVE: The growing shift toward home care services assumes that "being home is good" and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for…
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear…
BACKGROUND AND AIM: Gastrostomy placement has become an integral mechanism for delivering nutritional support to children with severe neurological disability. Its impact on gastroesophageal reflux and mortality remains contentious. We examined the…
Patients diagnosed with abdominal pain related to mitochondrial neurogastrointestinal encephalopathy (MNGIE) may benefit from splanchnic nerve blockade. MNGIE, varying in age of onset and rate of progression, is caused by loss of function mutation in…
The Functional Disability Inventory (FDI; Walker LS, Greene JW. The functional disability inventory: measuring a neglected dimension of child health status. J Pediatr Psychol 1991;16:39-58) assesses activity limitations in children and adolescents…
Mother-to-child transmission (MTCT) of HIV represents a particularly dramatic aspect of the HIV epidemic with an estimated 600,000 newborns infected yearly, 90% of them living in sub-Saharan Africa. Since the beginning of the HIV epidemic, an…
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…
Children with cancer often consider treatment procedures to be more traumatic and painful than cancer itself. Previous research indicates that parents' behavior before and during painful medical procedures influences children's distress level.…
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…
Progressive respiratory failure is a common modality of death in children with a terminal illness. The management of respiratory failure, and in particular symptoms of dyspnoea and musculoskeletal chest pain in children receiving palliative care,…
The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff.…
We have assessed the effect of adverse childhood experiences on the lifetime prevalence of suicide ideation in a cross-sectional study involving 182 patients aged 18 to 44 years, consecutive attenders at an A&E review clinic. All participants were…
AIMS AND OBJECTIVES: To explore children's, parents' and nurses' views on participation in care in the healthcare setting. BACKGROUND: Children have a right to be consulted and involved in their care. DESIGN: The grounded theory method was used and…
BACKGROUND: Parent participation is viewed as a pivotal concept to the provision of high quality nursing care for children and their families. Since the 1990's, the term 'partnership with parents' has increasingly been reported in the literature and…
A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…
BACKGROUND: In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. However the relationship between child self and parent proxy-reports has been…
BACKGROUND: Currently, approximately 85% of children with significant congenital heart problems survive to adolescence and adulthood. This survival rate represents a dramatic improvement in the medical and surgical care of congenital heart disease…
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…
OBJECTIVE: To describe the incidence, survival, and neurologic outcome of in-intensive-care-unit (ICU) cardiac arrest and to identify factors predictive of survival to hospital discharge. METHODS: We performed a retrospective cohort study. Eligible…
Qualitative studies of families with children who have cancer or other serious illnesses have found that families often come to view their child and their lives as normal. They manage illness-related demands using family management styles that…
This study explored the experiences and needs of nine parents who had received hospital-based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal…
