Is it necessary - and possible - to discuss death with a child in palliative phase? How should one approach the subject? A recent Swedish study demonstrated the benefits for parents who discussed with their child his or her imminent death, and raised…
Pain and cancer cannot be dissociated. A particular feature observed in children is that the child exhibits a certain psychomotor atony with increasing pain. The child complains less and less, making it difficult to recognize the degree of suffering…
The purpose of this article is to present a model of factors that may influence a child's response to a painful procedure when parents are distraction coaches during the procedure. Nonpharmacological interventions, in particular, distraction, and…
Constipation is prevalent in pediatric oncology patients because of treatment with vinca alkaloids and/or narcotics and lifestyle changes secondary to disease process. Sequelae of constipation include anorexia, nausea, vomiting, abdominal pain,…
OBJECTIVE: Escitalopram is a selective serotonin reuptake inhibitor antidepressant indicated for use in adults. This trial examined the efficacy and safety of escitalopram in pediatric depression. METHOD: Patients (6-17 years old) with major…
Rare diseases are frequently life-threatening or chronically debilitating and the impact on the quality of life of affected patients and their family members is thus significant. However, drug development for these conditions has been limited by a…
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…
The Hammersmith functional motor scale for children with spinal muscular atrophy was modified to establish a standard measure of functional ability in children with non-ambulant spinal muscular atrophy types 2 and 3 in a longitudinal multi-center…
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…
Critically ill children are treated with opioid medication in an attempt to decrease stress and alleviate pain during prolonged pediatric intensive care. This treatment plan places children at risk for opioid dependency. Once dependent, children need…
This qualitative study investigated the caregiving experiences of mothers of children with thalassemia. Using a semistructured questionnaire, the researchers interviewed a convenient sample of 19 mothers who have children with thalassemia. A…
OBJECTIVE: To characterize the natural progression of infantile-onset Pompe disease. STUDY DESIGN: Retrospective chart reviews of 168 patients with documented acid alpha-glucosidase deficiency and symptom onset by 12 months of age; Kaplan-Meier…
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…
Mitochondrial diseases affect all age groups, but those with childhood onset often seem to experience the greatest burden of disability. In some paediatric patients this can be explained by a cumulative disability acquired over many years. In others,…
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…
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…
GOALS: In this multicenter crossover study, our aim was to evaluate the efficacy and acceptance of acupuncture as a supportive antiemetic approach during highly emetogenic chemotherapy in pediatric oncology. PATIENTS AND METHODS: Eleven children…
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…
In this chapter we review theoretical and empirical advances in research on adolescent development in interpersonal and societal contexts. First, we identify several trends in current research, including the current emphasis on ecological models and…
This article reviews mood disorders in children and adolescents, the diagnostic criteria, and important differential diagnoses to be considered. Critical points in the treatment of mood disorders and comorbid conditions and the important role the…
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…
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…
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…
This paper reports on findings from an externally funded research study designed to map and analyse the educational preparation for cancer and palliative care nursing for children and adolescents. The courses reviewed in the whole study, were the…
Children and young people with advanced cancer frequently have a central venous access device (central line) in place which can be used for intravenous medication for symptom management. Those that do not may need a subcutaneous device for medication…
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…
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…
Males with Duchenne muscular dystrophy have sub-average cognitive capacities and may manifest more specifically language-related deficits. In the current study, the information-processing capacity, reading performance, and behavioral functioning of…
ABSTRACT: BACKGROUND: SPARCLE is a cross-sectional survey in nine European regions, examining the relationship of the environment of children with cerebral palsy to their participation and quality of life. The objective of this report is to assess…
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…
This study characterizes cardiorespiratory dysregulation in young girls with MECP2 mutation-confirmed Rett syndrome (RS). Respiratory inductance plethysmography of chest/abdomen and ECG was obtained during daytime wakefulness in 47 girls with MECP2…
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…
Costello syndrome (CS) is a rare genetic condition due to germline mutations in HRAS proto-oncogene and characterized by increased birth weight, postnatal growth retardation, distinctive facial appearance, typical medical problems (including feeding…
OBJECTIVE: The aim of this study was to investigate the efficacy and efficiency of an add-on treatment with the synthetic cannabinomimetic nabilone on patients with chronic pain. Of major interest were the evaluation of the influence the treatment…
In North America, parents are not expected to outlive their child. When they do, neighbours, co-workers, friends and family do not know what to say or do resulting in parents feeling isolated in their grief and left alone to find the support they…
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…
