Who are the primary caretakers of children born to HIV-infected mothers? Results from a multistate surveillance project.

Objective: To determine the primary caretakers of children born to women with human immunodeficiency virus (HIV) infection.

Methods: We interviewed women at least 18 years of age who have been reported with HIV infection or acquired immunodeficiency syndrome to local health departments in 10 cities and states regarding the primary caretaker of their children born since 1977.

Results: Of 541 HIV-infected women who had been pregnant since 1977, 88% had living children. These women comprised 478 family units (mother and children); 234 (49%) of these units consisted of two or more children. The most common primary caretakers for all children within a family unit were the mother alone (46%), grandparents (16%), and both mother and father (15%). When the mother used injection drugs or lived alone, in a shelter, or with friends, almost one quarter of all children were cared for by their grandparents. Only 30% of the mothers knew about child care assistance services, and only 8% had contacted or used these services.

Conclusions: Mothers with HIV, often alone, are the primary caretakers of their children. Increased provisions for child care assistance and planning for future permanent placement of orphaned children are urgently needed.