BACKGROUND: Child mortality rates during hospitalisation for acute illness and after discharge are unacceptably high in many under-resourced settings. Childhood vulnerability to recurrent illness, and death, is linked to their families' situations…
OBJECTIVES: Children with medical complexity (CMC) have high readmission rates, but relatively little is known from the parent perspective regarding care experiences surrounding and factors contributing to readmissions. We aimed to elicit parent…
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to…
CONTEXT: Approximately 25% of children diagnosed with cancer eventually die. Losing a child puts parents at increased risk for developing psychological problems. OBJECTIVES: To explore parents' perceptions of the interaction with health care…
BACKGROUND: The death of a child is a devastating event that results in profound grief and significant psychosocial and physical morbidities in parents. The parental grief journey is a complex phenomenon necessitating the utilization of newer models…
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric…
BACKGROUND AND OBJECTIVE: Even though patients with cystic fibrosis (CF) are continuously improving their life expectancy, guidelines for transition to adult services have not been clearly determined yet. The aim of this study was to analyze the…
OBJECTIVES: To evaluate whether adult specialists comply with the basic principles for a successful transition of adolescents with chronic disorders, and to determine whether the characteristics of the adult specialists have an influence on applying…
PURPOSE OF REVIEW: Nonadherence to treatment recommendations, especially when associated with transition to adult care providers, account, by some estimates, for most organ rejections and death in long-term pediatric survivors of solid organ…
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care…
Videotelephony (real-time audio-visual communication) has been used successfully in adult palliative home care. This paper describes two attempts to complete an RCT (both of which were abandoned following difficulties with family recruitment),…
BACKGROUND: The exchange of information is an integral component of continuity of health care and may limit or prevent costly duplication of tests and treatments. This study determined the probability that patient information from previous visits…
This case study assesses the effect that health and social care had on the chronic life-limiting condition of a young man going through transition from children's to adult services. He was taken into foster care at 16 years old and placed with his…
The cyclical nature of chronic illness requires that children with inflammatory bowel disease be transitioned to the adult medical system with as much continuity of care as possible. Transition from pediatric to adult medical care continues to…
OBJECTIVE: This study examined the process of health care transition (HCT) posing the following questions: What are the transition experiences of youths and young adults with disabilities and special health care needs, family members, and health care…
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…
With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate…
BACKGROUND: The influence of continuity of care on outcomes of care for patients with type 2 diabetes is poorly understood. OBJECTIVE: To examine the relationships between continuity, glucose control, and advancement through stages of change for…
Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is…
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…
Process mapping is a qualitative tool that allows service providers, policy makers, researchers, and other concerned stakeholders to get a "bird's eye view" of a home health care organizational network or a very focused, in-depth view of a component…
Longitudinal data from The Rand Corporation's Health Insurance Experiment were used to test the hypothesis that provider continuity can be modeled as one behavioral consequence of patient satisfaction. Bivariate and multivariate analyses (controlling…
OBJECTIVE: To examine whether continuity of care with an individual health care provider is associated with the number of hospital emergency department (ED) visits in a statewide Medicaid population. DESIGN: A cross-sectional study based on a 100%…
Although general principles guiding the transition of individuals with chronic illness from pediatric to adult care have been established, guidelines specific for the transition of individuals with cystic fibrosis (CF) have not. To aid in the…
OBJECTIVE: This study examines the potential role for palliative care services in the care of individuals with muscular dystrophy and spinal muscular atrophy, and the support of their families., METHODOLOGY: Semistructured interviews were conducted…
Forty-five families of children with life-threatening illnesses for up to 10 years were interviewed. The children required many medical disciplines, as well as social, educational and material provisions, and parents described the complex and often…
OBJECTIVE--To examine the relation between general practitioners' knowledge about their patients and the use of resources in consultations. DESIGN--A cross sectional evaluation of consultations. SETTING AND SUBJECTS--A representative sample of 133…
The care of children in the U.S. with life-limiting illnesses is inadequate. Misallocated resources, flawed assumptions and models of care, and a lack of appropriate professional education foster a costly, inefficient system that falls short of its…
BACKGROUND: Continuity of care is a key component of care in complex and chronic conditions. Despite its importance, it is often absent in chronic-disease management. One challenge has been identifying tools to measure care continuity. In one context…
BACKGROUND: A multidisciplinary outpatient clinic at a tertiary care children's hospital supported and staffed by a children's hospice was created to enhance and expand the inpatient palliative care services available to families of children with…
BACKGROUND AND PURPOSE:
The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study…
