This study describes and conceptualizes the experiences of stigma in a group of children living with HIV in Sao Paulo, Brazil, and evaluates the impact of access to highly active antiretroviral therapy (HAART) over the social course of AIDS and over…
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…
Family management styles (FMSs) explain some of the complexities embedded in a family with a child who has chronic illness. The FMS typologies provide descriptions of family adjustment and management of care. These 5 distinct patterns may be valuable…
The authors examined the associations of 3 types of psychological coping (task-based, emotion-based, avoidance), 2 types of religious coping (positive, negative), and their interactions with grief of 57 mothers bereaved by the sudden death of a…
This article reviews the unique challenges of pediatric palliative medicine. These challenges originate from the specific epidemiology of pediatric diseases for which palliative care is indicated and the necessity to provide child-focused,…
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…
The association of treatment adherence with quality of life (QOL) and the role of sickle cell disease complications were explored in children with sickle cell disease. Primary caregivers of 43 children, ages 5 years and older, and 21 children, ages 8…
This paper traces the history of the specialist meanings of 'cure' in paediatric oncology in the UK, how they have changed with increasing organization of the discipline, ever-rising survival rates for all childhood cancers, and with feedback from…
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…
This qualitative systematic review of the clinical methodology used in randomised, controlled trials of oral opioids (morphine, hydromorphone, oxycodone) for cancer pain underlines the difficulties of good pain research in palliative care. 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…
OBJECTIVES: Teaching hospitals are perceived to provide a higher quality of care for the treatment of rare disease and complex patients. A substantial proportion of stage I palliation for hypoplastic left heart syndrome (HLHS) may be performed in…
A review and analysis of 43 transition studies published from 1982 through 2003 was conducted. The studies reviewed represent the diverse purposes of international researchers for examining transition issues and questions. Findings of this literature…
The purpose of this study was to determine the adequacy of the alternate forms reliability of three versions of the Oucher pain scale. Because the original large-sized posters were unwieldy for use by nurses with children in clinical settings, it…
The changing environment in neonatology and perinatology has led to the examination of issues surrounding palliative care. Newborn palliative care should be considered in three general areas: (1) Neonates at the limits of viability. As advances in…
We compare the clinical course of 74 boys 10-18 years of age with Duchenne muscular dystrophy (DMD) treated (40) and not treated (34) with deflazacort. Treated boys were able to rise from supine to standing, climb stairs and walk 10 m without aids,…
Individuals with Duchenne muscular dystrophy may benefit from gastrostomy tube feeding due to progressive dysphagia and malnutrition. However, due to their severely impaired pulmonary function, these individuals are at risk of severe complications…
When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a…
AIMS: To create a general physiologically based pharmacokinetic (PBPK) model for drug disposition in infants and children, covering the age range from birth to adulthood, and to evaluate it with theophylline and midazolam as model drugs. METHODS:…
Objective To develop a measure of parent adjustment related to caring for a child with achronic illness and to evaluate the reliability and validity of the measure with a group of parentsof children with brain tumors. Methods One-hundred forty-nine…
The objective of this article is to review all published normative ethical and clinical guidelines concerning the genetic carrier testing of minors. The databases Medline, Philosopher's Index, Biological Abstracts, Web of Science, and Google Scholar…
Background: Modern medicine provides unprecedentedopportunities in diagnostics and treatment. However,in some situations at the end of a patient’s life, manyphysicians refrain from using all possible measures to prolonglife. We studied the…
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…
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…
There is growing empirical evidence that the U.S. healthcare system fails to meet the needs of children with life-threateningconditions and their families. The confluence of several recent developments has created a critical window of opportunity…
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…
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…
