The home care of children who require long-term mechanical ventilation is a recent phenomenon, having occurred to a significant degree only since the late 1970s. Many of the children now being treated in this way were premature infants who had survived severe respiratory distress syndrome but developed bronchopulmonary dysplasia, a condition that may be associated with prolonged dependence on a respirator and supplemental oxygen. Others are children with a variety of neurological syndromes that impair respiration. To date, remarkably little has been published about the outcome of providing such treatment at home and still less about its impact on the families of the children.
In response to these and other children with dependence on medical technology, Surgeon General Koop convened a Workshop on Children With Handicaps and Their Families in Philadelphia (Pa) in 1982. Following that workshop the Division of Maternal and Child Health funded, through its Special Projects of