National guidance in the United Kingdom on the provision of services for children and young people with cancer and their families has consistently emphasised the need for specialist nursing as central to the delivery of safe and effective care. The…
The ultimate aim of our research program is to provide strategies that facilitate parental decision-making for parents of children with cancer receiving end-of-life care. As a first step to develop this program, we needed insight into parents'…
The purpose of this work was to retrospectively evaluate the medical needs of children with chronic and/or life-threatening illness attending summer camp at Barretstown Gang Camp (Ireland). Data on medical facility visits collected over 28 sessions…
This paper describes the experiences of children (7-16 years) affected by life-threatening illness, attending a therapeutic recreation programme. In total, 240 children completed self-report questionnaires prior to the programme, with decreased…
This investigation explored how parents perceived the child's leukaemia and how well coped with it. Forty-one mothers and 30 fathers recruited from the largest Hellenic paediatric hospital were asked to answer closed and open-ended questions and to…
We describe self-reported strategies used by persons living with HIV/AIDS in Botswana, Lesotho, South Africa, and Swaziland to manage common HIV-related symptoms. A questionnaire asked participants to list three to six symptoms they had recently…
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,…
Duchenne muscular dystrophy (DMD) is a fatal disorder affecting approximately 1 in 3,500 live born males, characterized by progressive muscle weakness. Several different strategies are being investigated in developing a cure for this disorder. Until…
Evaluation of children who have hip pain can be a diagnostic challenge. This article reviews pertinent history taking, physical examination, laboratory testing, and imaging studies that assist in reaching a correct diagnosis. It also reviews the…
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…
Many pediatric health care institutions lack guidelines to address the presence of family members during resuscitation activities. This integrative literature review was used to establish an evidence-based approach that would compliment our…
Recent studies highlight the need for an integrated model for palliative and end-of-life pediatric care. About 55,000 children die each year in the United States and, on any given day, about 8,600 children could benefit from care that acknowledges…
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…
Care of children at the end of life frequently involves ethical dilemmas and difficult decisions. These ethical dilemmas often complicate the already challenging circumstances surrounding the death of a child; therefore, the knowledge and application…
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…
Existing research identifies numerous variables that may influence children's distress responses during medical procedures. In preparation for a large multisite study to test relationships among these numerous variables and parent distraction…
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…
An in-depth exploratory study identified major stressors experienced by children diagnosed with cancer. Four themes were used to analyze data from a series of focus group discussions and individual interviews with children, parents, hospital…
A diagnosis of a long-term illness in a child will bring on a major upheaval in the lives of the whole family involved and leads to a long-standing relationship with health care personnel. The purpose of this study was to describe parents'…
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…
Parent-assigned pain scores have been used as proxy measures of pain for children, such as those with cognitive impairment (CI), who cannot self-report. However, the accuracy of parent-assigned pain ratings for children with CI has not been studied.…
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…
Using the findings of a small-scale qualitative investigation based on in-depth interviews with mothers attending a tertiary paediatric referral centre in London, this paper explores professional and parental discourses in relation to gastrostomy…
