Support services for the care of chronically ill children
- Margaret R Ugalde, RN, DrPH
Margaret R Ugalde, RN, DrPH
- Assistant Professor of Pediatrics
- Baylor College of Medicine
Technologic advances have dramatically improved survival rates for children with life-threatening conditions caused by congenital anomalies, disease, or injury . As a result, the population of children living with chronic illness or disability continues to grow, and the vast majority of these children live at home with their families . A trend toward earlier discharge of children from hospitals and rehabilitation facilities to outpatient or home health care also exists. Thus, primary care clinicians increasingly are expected to coordinate the care for chronically ill children in the outpatient or home setting [1,2].
Many medically fragile children who require complex care are receiving that care at home. Home care is viewed as more cost-effective than institutional care [3-7]. Families are required to perform care that used to be provided by hospital staff [8,9]. More families will be asked to care for chronically ill and disabled children at home as the family-centered care model that has been adopted by pediatric hospitals is extended into the home [8,10,11]. The family-centered approach to care increases the likelihood of desirable outcomes for children with disabilities and their families . Caring for these children in the home places additional strain on daily family life. The medically-fragile child's "special" routine and health care needs must be incorporated into the normal routines of work, school, transportation, child care, and housekeeping [10,11].
The particular needs of families caring for chronically ill children and the resources and support services available to them are reviewed here. The medical, developmental, psychosocial, and financial aspects of caring for children with special needs are discussed separately. (See "Children with special health care needs".)
Children with chronic illness have been defined as those "who have or are at risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally" [1,2]. Approximately 27 percent of children in the United States younger than 18 years of age (12.6 million children) met this definition in 2006 [1,2].
The prevalence of childhood disability is higher for boys, school-age children, children from low-income and single-parent families, and children in rural communities . Childhood disability most frequently is associated with respiratory disease and mental impairment [1,2,13-15].
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