Mitochondrial neurogastrointestinal encephalomyopathy (MNGIE) syndrome is a rare disorder that presents in childhood; however, marked delay in diagnosis is common. We report a case and review the literature describing the typical features that should…
This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation…
The poor response to hypercaloric feeding in ill adults may be caused by failure to distinguish cachexia from starvation (Table 1). The chief difference between starvation and cachexia is that refeeding reverses starvation but is less effective for…
INTRODUCTION: A service established in October 1998 aimed to provide nursing and psychological support in the community to families with children who have non-malignant life-threatening illnesses. The purpose of this study was to conduct a pragmatic…
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative…
The provision of bereavement support for parents who have lost a child is based on the assumption that it will lead to better subsequent adjustment. To determine the validity of this assumption, a systematic review of studies was undertaken, looking…
OBJECTIVE: To assess the efficacy of a palliative care clinic (PCC), which provided some of the interdisciplinary services and expertise of an inpatient consult service to outpatients, in traditional clinic sessions. DESIGN: Chart review. SETTING: A…
BACKGROUND: Percutaneous endoscopic gastrostomy (PEG) is a simple and reliable method, but there are few data about its use in pediatric forms of neuromuscular diseases (NMD). The aim of this study was to evaluate the nutritional effects and…
Couples with chronically ill children are particularly at risk for experiencing marital distress. The study presented here is a 2-year follow-up of a randomized control trial that assessed the efficacy of Emotionally Focused Therapy (EFT) in…
In pediatric oncology nursing, and across practice disciplines in general, clinical research serves as the cornerstone for improving patient care. Historically, advances made in the care and cure of childhood cancer have stemmed directly from…
Conflicts between residents and attending physicians over ethical issues often occur and residents must attempt to navigate these perilous waters. A brief description of a conflict concerning informed consent and professional role expectations in a…
OBJECTIVE: To assess the cost-effectiveness of various strategies to evaluate heart murmurs in children. METHODS: We modeled 6 strategies to follow the initial examination by the pediatrician: (1) refer suspected pathologic murmurs to a cardiologist,…
PURPOSE: Despite multiple efforts to improve the experience for dying patients, researchers still struggle to identify appropriate outcome measures that assess patients' and families' experiences. If health care systems are to provide excellent,…
A significant proportion of children requiring palliative care have neurodegenerative life-threatening illnesses (NLTIs). While most of their care is provided at home by their families over many years, there is a paucity of research examining…
This article presents the findings of a study that explored documentation surrounding the end-of-life care of children with cancer. An in-depth history audit of 18 children with cancer, who died from disease progression at a single tertiary…
Children with complex healthcare needs typically require technical and/or medical equipment in the home. This growing group of children and families need support that crosses agency and professional boundaries, necessitating effective multi-agency…
BACKGROUND: As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and…
AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a…
Purpose: To describe the challenges of finding the findings in qualitative studies. Method: Review of literature on representation in qualitative research and analysis of 99 reports of qualitative studies of women with HIV infection. Findings:…
BACKGROUND: Earlier studies have yielded inconsistent findings regarding gender differences with respect to burden and depression among informal community caregivers of dementia patients. OBJECTIVES: The aim of the study was to determine whether or…
Almost every woman and some men will encounter hot flushes during their lifetime. Despite the prevalence of the symptoms, the pathophysiology of hot flushes remains unknown. A decline in hormone concentrations might lead to alterations in brain…
Recently, two novel highly selective mu-opioid receptor (MOR) agonists, endomorphin-1 and endomorphin-2, have been isolated from bovine as well as human brains and were proposed to be the endogenous ligand for MOR. Later, endomorphin-1 and…
Poor nutritional status and growth failure are common in children with cerebral palsy (CP). The aim of this study was to assess, within a subgroup of a large and clearly defined population of children with disabilities, the impact of feeding…
AIM: To investigate the factors that influence the successful implementation of audit in a palliative care setting. BACKGROUND: Quality assurance is a necessary component of contemporary health care. In the past, palliative care has not generally…
Clinical decision making cannot rely on evidence alone. Although significant advances have occurred in the development of high-quality evidence, similar efforts must be made to develop and evaluate tools that can be used at the bedside to…
OBJECTIVE: To validate a sputum induction technique in cystic fibrosis (CF), we examined the relation between airway inflammation and pulmonary function in children with CF by correlating inflammatory indexes in induced sputum with FEV(1). STUDY…
