摘要：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. Methods . Caregivers of 97 HIV-positive children, 101 children with a chronic illness, and 102 healthy children were surveyed regarding amounts of paid and unpaid care provided. Caregiving value was determined according to national hourly earnings and a market replacement method. Results . Chronically ill children required significantly more care time than HIV-positive children (7.8 vs 3.9 hours per day). Paid care accounted for 8% to 16% of care time. Annual costs were $9300 per HIV-positive child and $25 900 per chronically ill child. Estimated national annual costs are $86.5 million for HIV-positive children and $155 to $279 billion for chronically ill children. Conclusions . Informal caregiving represents a substantial economic value to society. The total care burden among chronically ill children is higher than that among children with HIV. Approximately 10% to 18% of US children are affected by moderate-to-severe chronic illness, and the rate is increasing. 1 – 4 New health care technologies, the emphasis on controlling costs, and adverse effects of hospitalization on children encourage the use of home care for chronically ill children. 5 , 6 Fiscal pressures lead to costs being shifted away from publicly funded institutional care to home care, where labor is reorganized so as to make use of the no-cost services available. This restructuring simultaneously affects public health care programs, labor markets, and families, who now often have no choice but to provide informal home care. Few studies have focused on the economic or social value of pediatric home care, 5 , 7 , 8 and none have measured time taken to care for ill children at home. 9 – 12 Home care of children, as a cost saving policy, became a national concern with the increases in numbers of pediatric HIV/AIDS cases in the 1980s. Other chronic illnesses requiring home care, however, affect a much larger portion of our nation’s children. Home care viability is dependent on the continued willingness and ability of caregivers, predominantly women, to provide care. 13 The well-documented emotional burden of caregivers calls into question the sustainability of this shift of care to families. Government systems need more information about caregiver burden, especially in regard to children’s care, already considered the responsibility of the family. In this study, we compared types, amounts, and costs of care provided to HIV-positive children and chronically ill children, using healthy children to control for basic care needs.
