Browse Items (44 total)

OBJECTIVE: We aimed to assess Child Death Overview Panel (CDOP) data validity, and cause of death classification, by comparison with information from a local birth cohort study (Born in Bradford, BiB), and another cause of death coding system (causes…

OBJECTIVE: To describe the perceptions of caregivers of children with medical complexity (CMC) about their decision to pursue tracheostomy for their children, in particular the satisfaction with their decision. STUDY DESIGN: In this qualitative study…

This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and…

Background: In children with profound intellectual and multiple disabilities (PIMD), discussions about end-of-life decisions (EoLDs) are comparatively common. Nurses play a crucial role in the care for these children, yet their involvement in EoLD…

Specificities of situation of individuals with multiple disabilities and pediatric neurological pathologies call for specialized and multi-field competences that are commonly allowed and disallowed in contemporary clinical contexts. However what must…

BACKGROUND: The provision of emotional and psychological support for all family members who need it is an essential element of holistic palliative care. Within East Anglia's Children's Hospice, teams of professionally trained and experienced workers…

«Euthanasia» was the cynical euphemism used by the Nazis to refer to the systematic murder of hundreds of thousands of mentally sick and handicapped people between 1939 and 1945, at least 6,000 of whom were children. Based on the example of Günter…

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…

This article investigates the relationships of child- and family-related variables with family function in families with children who have Duchenne muscular dystrophy. Child-related variables included level of disability (indicator: Barthel Index)…

A prospective controlled study with repeated measures before and after surgery examined the medical, surgical, and health outcomes of gastrostomy for children with disabilities at a tertiary paediatric referral centre in the North Thames area, UK.…

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…

Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and diversity. This article offers…

BACKGROUND: In this paper we compare the results in an analysis of determinants of caregivers' health derived from two approaches, a structural equation model and a log-linear model, using the same data set. METHODS: The data were collected from a…

OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental…

OBJECTIVES: We compared types, amounts, and costs of home care for children with HIV and chronic illnesses, controlling for the basic care needs of healthy children to determine the economic burden of caring for and home care of chronically ill…

Children's Hospital Boston began a major pain assessment and management initiative 3 years ago: Pain assessment and management are considered one of the institution's primary standards of care. The initiative included State of the Science meetings…

Knowledge of accurate survival rates of children with neurologic disabilities is important for third-party insurance payers planning future medical expenses. This is of particular importance to pediatric skilled nursing facilities (SNFs) that depend…

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…

The Paediatric Pain Profile (PPP) is a 20-item behaviour rating scale designed to assess pain in children with severe neurological disability. We assessed the validity and reliability of the scale in 140 children (76 females, mean age 9 years 11…

This study examined stress factors in families with a school-aged child with a disability. Path analyses revealed that children's demandingness and neediness for care was related more to maternal stress and that child's acceptability was related more…

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…

The Diana Children's Community Teams (DCCTs), a new nurse-led service funded by the Department of Health, were established to provide care in the community as an alternative to hospital for children with life-threatening/life-limiting illnesses and…

BACKGROUND: Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some…

Transitional care for young people with life-limiting illness is a particularly complex issue. The process of moving from paediatric to adult services is often fraught and poorly planned. As a result, this can add to the distress experienced by the…

This article, written by a parent of 2 youths with special health care needs and a pediatrician, builds on the Medical Home framework to give concrete examples of what physicians and families can and should do to prepare families for transition(s).…

OBJECTIVES: More than 85% of children born today with chronic medical conditions will live to adulthood, and many should transfer from pediatric to adult health care. The numbers of adults with congenital heart defects (CHDs) are increasing rapidly.…

Sleep disorders are common in children with mental retardation and neurologic disorders. Melatonin, a recently developed natural compound, has been used successfully in sleep disorders. I report my experience with melatonin in an open, prospective…

Essential fatty acids (EFA) are important for the normal development and functioning of the brain, retina and immune competent cells. Severely neurologically handicapped children often have feeding difficulties, and the composition of the diet may be…

The aim of this study was to estimate the prevalence and severity of feeding and nutritional problems in children with neurological impairment within a defined geographical area. In a cross-sectional study, a validated questionnaire was sent to 377…

The Functional Independence Measure for Children (WeeFIM) and the Pediatric Evaluation of Disability Inventory (PEDI) are the most commonly used measures of functional performance in children. The purpose of this study was to determine the concurrent…

BACKGROUND: This study was done to determine survival rates in subpopulations of severely neurologically disabled children who reside in pediatric skilled nursing facilities and to compare these survival rates with those in previously published…

Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that…

SCOPE OF THE REPORT: This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what…
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