OBJECTIVES: For pediatric complex care programs to target enhanced care coordination services to the highest-risk patients, it is critical to accurately identify children with medical complexity (CMC); however, no gold standard definition exists. The…
OBJECTIVE: When deciding how much hospital resources should be allocated to comprehensive primary care clinics for children with multisystem disorders, it is important to consider all of the non-primary care revenue streams associated with these…
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…
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)…
BACKGROUND: Globally, more than 97% of children needing palliative care reside in low- and middle-income countries, where there is very limited access to palliative care. Several community-based palliative care programs focused on adults, have been…
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…
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.…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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: Many youth with special health care needs have difficulties transferring to adult medical care. To address this, the Maternal and Child Health Bureau has made receipt of transition services a core performance outcome for community-based…
Background
Parents commonly report a significant improvement in quality of life following the provision of hospice and supportive care and have identified a need for such a service in the home. The purpose of this study was to understand the…
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…
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 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).…
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…
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…
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…
OBJECTIVE: Most children enjoy healthy childhoods with little need for specialized health care services. However, some children experience difficulties in early childhood and require access to and utilization of considerable health care resources…
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…
BACKGROUND: In 2020, the International Association for Hospice and Palliative Care redefined palliative care to incorporate the concept of serious health-related suffering. An estimated 21 million children globally live with conditions which would…
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…
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 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…
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…
The death of a child can have a devastating effect on the family. The pediatrician has an important role to play in supporting the parents and any siblings still in his or her practice after such a death. Pediatricians may be poorly prepared to…
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…
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…
