OBJECTIVES: To examine patterns of health care utilization among youth and young adults who have cerebral palsy (CP) and to provide information to guide the development of health services for adults who have CP. DESIGN: This study analyzed health…
OBJECTIVE--To determine parent's views on how death of their children should have been handled. DESIGN--Retrospective questionnaire survey of parents who had experienced death of their child. SETTING--Charitable organisation of bereaved parents.…
BACKGROUND: To examine the quality of transitional health care from the perspectives of young people with juvenile idiopathic arthritis (JIA) and their parents. METHODS: Adolescents with JIA and their parents were recruited from 10 major UK…
As increasing numbers of young people with chronic illness reach adulthood, their ongoing medical care must evolve to be delivered in an adult rather than paediatric setting, a process known as transition. Towards this goal, increasing numbers of…
Awareness is growing that young adults may have distinctive experiences of adult healthcare and that their needs may differ from those of other adult users. In addition, the role of adult health teams in supporting positive transitions from…
PURPOSE: To assess the course of life of young adults who grew up with a chronic or life-threatening disease, and to compare their course of life with that of peers from the general population. Optimal transition from pediatric to adult health care…
BACKGROUND: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. AIM:…
X-linked adrenoleukodystrophy (X-ALD) is the most frequent peroxisomal disease. The two main clinical phenotypes of X-ALD are adrenomyeloneuropathy (AMN) and inflammatory cerebral ALD that manifests either in children or more rarely in adults. About…
To understand how video telephone technology could support consultations between pathologists and surgeons, this study looked at what constitutes 'work' in clinical consultations. Using several methods (participant observation, video and interviews),…
This multiorganizational literature review was undertaken to provide an evidence base for determining whether or not recommendations for out-of-hospital termination of resuscitation could be made for children who are victims of traumatic…
OBJECTIVE: To review the work of one tertiary paediatric palliative care service in facilitating planned withdrawal of ventilatory support outside the intensive care setting, with the purpose of developing local guidance for practice. METHODS:…
Withdrawing life-sustaining technologies requires all of the resources and concepts that the field of palliative care has to offer. By learning some fundamental principles of medical management at the time of withdrawal and by mastering a few…
Withdrawing Artificial Nutrition and Hydration (WANH) in the neonatal intensive care units (NICUs) has long been controversial. In France, the practice has become a legal option since 2005. But even though, the question remains as to what the…
OBJECTIVES: To examine withdrawal and limitation of life-sustaining treatment (WLST) in an Australian paediatric intensive care unit (PICU) and to compare this experience with published data from other countries. DESIGN: Retrospective chart review…
One hundred and twenty-nine cases of Wilson's disease (WD) were assessed at index admission and two follow-ups (F1 and F2) on a range of clinical and biochemical variables. The commonest psychiatric symptoms throughout were incongruous behavior,…
A deficit of endogenous pain inhibitory systems has been suggested to contribute to some chronic pain conditions, one of them being fibromyalgia. The aim of the investigation was to test whether endogenous pain inhibitory systems were activated by a…
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
BACKGROUND: Corneal donation is a rare event among pediatric patients dying in children's hospices in Italy. Previous research suggests that lack of knowledge and negative attitude of Health Care Professionals (HCPs) are the most relevant factors for…
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and…
An examination of the policies regarding the care of extremely premature newborns reveals unexpected differences between Scandinavian countries and the Netherlands. Three topics related to decision-making at the beginning and at the end of life are…
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that…
The goal of this study was to examine sources of variation in the utilities assigned to health states. The authors selected a common clinical problem, carcinoma of the rectum, and examined the utilities assigned to colostomy, a common outcome of…
PURPOSE: The purpose was to examine the characteristics of children who use hospice care. DESIGN AND METHODS: Using the Andersen Model of Health Services Use, California Medicaid administrative databases were analyzed to describe the characteristics…
Infants (less than 1 year of age) have the highest death rates in the pediatric population, yet there is little published on hospice utilization for infant home deaths. We sought to describe: (1) where infants with a predisposing life-threatening…
OBJECTIVE: Little is known about factors that influence whether children with chronic conditions die at home. We sought to test whether deaths attributable to underlying complex chronic conditions (CCCs) were increasingly occurring at home and to…
Managing end-of-life care (EoL) is always emotionally taxing. Honest discussions about prognosis and EoL decision-making are often delayed due to questions about the legal competence of adolescents and young adults (AYA) to make decisions for…
Parents facing the death of their child have a strong need for compassionate professional support. Care services should be based on empirical evidence, be sensitive to the needs of the families concerned, take into account the…
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes,…
BACKGROUND: Specialist palliative care (SPC) is often needed to manage complex or refractory problems in children with life-threatening conditions during end-of-life. This study explores the perceptions of healthcare professionals (HPs) to determine…
BACKGROUND: The availability of interventions for bereaved parents have increased. However, most are practice based. To enhance the implementation of bereavement care for parents, an overview of interventions which are replicable and evidence-based…
The general view of descriptive research as a lower level form of inquiry has influenced some researchers conducting qualitative research to claim methods they are really not using and not to claim the method they are using: namely, qualitative…
