Home care for ventilator-assisted children: implications for the children, their families, and health policy.

This article presents findings from a national study of home care programs for ventilator-assisted children conducted between 1984 and 1987 by the Center for Health Administration Studies at The University of Chicago. These findings point to the issues that need to be addressed in the development of policies surrounding both the delivery and the financing of services for these children and their families: (a) ventilator-assisted children are a widely varying group with diverse needs; (b) most families report that though they are glad to bring their child home, many difficult adjustments are required to do so; (c) full-time nursing care offers support to families but also intrudes on their privacy; (d) both families and children need social and psychological support once the child is home; (e) the needs of the child and the family may change over time; and (f) the financial burden of having a child on a ventilator at home can be a big stress on the family.