To describe and to examine predictors of making custody plans by parents living with the human immunodeficiency virus (HIV) infection.
The custody plans of 296 parents living with HIV for 708 children were examined over 5 years, with at least 85% reassessed annually.
Over time, increasing numbers of parents living with HIV made custody plans for all of their children (23.8%-52.8%), typically with extended family members. However, parents change plans frequently, and 44.8% of parents living with HIV died without custody plans. Custody planning was less likely in families with only adolescent children, when parents had a partner, or when parents were depressed. Parents' disclosure of HIV status, physical health status, substance use, and ethnicity were unrelated to making custody plans.
Custody planning is a slow and unstable process in families affected by HIV.